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• Published: 06 May 2021

Co-producing knowledge in health and social care research: reflections on the challenges and ways to enable more equal relationships

• Michelle Farr   ORCID: orcid.org/0000-0001-8773-846X 1 , 2 ,
• Philippa Davies   ORCID: orcid.org/0000-0002-2678-7126 1 , 2 ,
• Heidi Andrews 1 , 2 ,
• Darren Bagnall 1 , 2 ,
• Emer Brangan   ORCID: orcid.org/0000-0002-1288-0960 1 , 2 , 3 &
• Rosemary Davies   ORCID: orcid.org/0000-0001-9969-1902 1 , 4  

Humanities and Social Sciences Communications volume  8 , Article number:  105 ( 2021 ) Cite this article

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Researchers are increasingly encouraged to co-produce research, involving members of the public, service users, policy makers and practitioners in more equal relationships throughout a research project. The sharing of power is often highlighted as a key principle when co-producing research. However, health and social care research, as with many other academic disciplines, is carried out within embedded hierarchies and structural inequalities in universities, public service institutions, and research funding systems—as well as in society more broadly. This poses significant challenges to ambitions for co-production. This article explores the difficulties that are faced when trying to put ideal co-production principles into practice. A reflective account is provided of an interdisciplinary project that aimed to better understand how to reduce power differentials within co-produced research. The project facilitated five workshops, involving researchers from different disciplines, health, social care and community development staff and public contributors, who all had experience in co-production within research. In the workshops, people discussed how they had attempted to enable more equal relationships and shared ideas that supported more effective and equitable co-produced research. Shared interdisciplinary learning helped the project team to iteratively develop a training course, a map of resources and reflective questions to support co-produced research. The gap between co-production principles and practice is challenging. The article examines the constraints that exist when trying to share power, informed by multidisciplinary theories of power. To bring co-production principles into practice, changes are needed within research practices, cultures and structures; in understandings of what knowledge is and how different forms of knowledge are valued. The article outlines challenges and tensions when co-producing research and describes potential ideas and resources that may help to put co-production principles into practice. We highlight that trying to maintain all principles of co-production within the real-world of structural inequalities and uneven distribution of resources is a constant challenge, often remaining for now in the realm of aspiration.

Introduction

Co-production of research—where researchers, practitioners and members of the public collaborate to develop research together—is promoted as a way to strengthen public involvement, and create and implement more relevant and applicable knowledge, that is used in practice (Staniszewska et al., 2018 ; Hickey et al., 2018 ). Academic disciplines and funding bodies define the concept of co-production differently, using divergent methods and theories (Facer and Enright, 2016 ), with subsequent debate about what co-production is and who may be doing it ‘properly’. We use the INVOLVE definition and principles of co-producing research (Box  1 ) (Hickey et al., 2018 ), which includes the often-agreed principle to share power more equally between partners. However, the extent to which this is achievable within structural inequalities and institutional hierarchies is debatable (Flinders et al., 2016 ).

This commentary article reflects on a project that aimed to:

share interdisciplinary learning about co-produced research

understand how to enable more equal relationships with co-production partners, particularly public contributors—defined as members of the public including patients, potential patients, carers and people who use health and social care services (in contrast to people who have a professional role in health and social care services or research) (NIHR CED, 2020 ).

develop training and resources to support co-produced research.

The project was developed by a team of three applied health researchers, a public involvement lead and three public contributors (with in-depth experiences of co-produced research) undertaken within the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) West, an organisation that develops applied health and social care research. Through facilitating five project workshops, we engaged with eleven researchers from five disciplines; six practitioners; and eleven public contributors with involvement and co-produced research experiences. We shared practical lessons across disciplinary boundaries about how to do co-produced research more equitably (Oliver and Boaz, 2019 ). These workshops helped the project team progressively and iteratively develop a training course, a map of resources (Farr et al., 2020 ) and reflective questions (Davies et al., 2020 ), freely available to support co-produced research.

This article explores the extent to which these multidisciplinary lessons can help us transform knowledge production in more equitable ways, outlining our learning from this project. First, we overview some conceptual issues with the use of the word ‘co-production’. We then discuss key matters raised in our interdisciplinary workshops: ‘Who is involved and when in co-produced research?’; ‘Power dynamics within health and social care research’; and ‘Communication and relationships’. We conclude by highlighting that bringing co-production principles into the real research world is fraught with difficult and messy compromises. Researchers (often lower in the academic hierarchy) may be caught up in battling systems and policies to enable co-production to happen, especially where they attempt to address issues of power and control within the research process.

Box 1: INVOLVE a Definitions and principles of co-produced research (Hickey et al., 2018 )

‘ Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge ’ (p. 4).

Principles include:

Sharing power where research is owned by everyone and people are working together in more equal relationships

Including all perspectives and skills to ensure that everyone who wants to make a contribution can do so, with diversity, inclusiveness and accessibility being key

Respecting and valuing the knowledge of everyone , with everyone being of equal importance, and benefitting from the collaboration

Reciprocity and mutuality , building and maintaining relationships and sharing learning

Understanding each other with clarity over people’s roles and responsibilities.

a INVOLVE supported active public involvement in NHS, public health and social care research, with a new NIHR Centre for Engagement and Dissemination (CED) launched in April 2020.

The concept of co-production

The NVOLVE co-production principles (Box  1 ) (Hickey et al., 2018 ) build on public policy co-production literature (Boyle and Harris, 2009 ; Staniszewska et al., 2018 ), which explores how service users can take an active role within the provision of public services (Brudney and England, 1983 ; Ostrom, 1996 ). A key premise is that service users have a fundamental role in producing services and outcomes that are important to them (Brandsen and Honingh, 2016 ). While in our project we particularly wanted to focus on ways of sharing power with service users and public contributors, defining who is involved in co-produced research varies across disciplines. The active involvement of service users/members of the public has sometimes been lost in research that is labelled as co-produced. UK funding councils such as the Economic and Social Research Council (ESRC) talk of co-produced research as developed between academic and non-academic organisations or communities (Campbell and Vanderhoven, 2016 ; ESRC, 2019 ). In health services research, authors have used the non-specific language of ‘stakeholders’ (Oliver et al., 2019 ). Sometimes the main research co-production partner has been practitioners (Heaton et al., 2016 ) and service users have been relegated to ‘context’ (Marshall et al., 2018 ), rather than being active agents and partners. This obfuscation of the role of service users/ members of the public in co-production is detrimental to the drive for inclusivity, democratisation and equity within co-produced research, which addresses the needs of service users/ marginalised citizens (Williams et al., 2020 ), overlooking the long political history of demands from service users to be more democratically involved in health and social care services and research (Beresford, 2019 ).

In our project, we particularly wanted to focus on how to equalise relationships with service users and public contributors (defined above) within co-produced research. The egalitarian and democratic principles of co-production means that service users, who may have been marginalised and are on the receiving end of professional ‘expertise’, now become equal partners in research (Williams et al., 2020 ). Best practice in co-produced research remains contested, with a significant theory-practice gap (Lambert and Carr, 2018 ). We wanted to understand what practices and resources could help bring principles into practice, when we are working within a context of structural inequalities.

Who is involved and when in co-produced research?

INVOLVE states that co-production should ‘occur from the start to the end of the project’ (Hickey et al., 2018 ) (p. 4). The principle to ‘include all perspectives and skills—make sure the research team includes all those who can make a contribution’ (Hickey et al., 2018 ) (p. 4) can be highly aspirational.

In our interdisciplinary workshops we discussed how there is often a lack of funding to pay public contributors to help develop a funding application. Formative ideas about research priorities and design can often be made by researchers before other people are involved. Our workshop discussions noted that involving all stakeholders who potentially have an interest in a project could be a very large and diverse group. It would be difficult to involve everyone, and this could be in tension with the idea that smaller groups can work better together. There are usually practical constraints on team numbers, budgets to pay for public contributors’ time and project scale and size. A tension can exist between the number of people you can viably include, and the diversity of the group you are working with. More generally, workshop participants highlighted problematic issues of claims to representation, where people within a co-production group need to be aware that they don’t speak for everyone—not even everyone in a group they are there to ‘represent’—and there was a need to look for opportunities to draw other perspectives in.

Workshop discussions included that when public contributors join a project there is a need to support people to take on different roles, and for people to also have choice and work from their strengths, rather than assuming that everyone has to do everything. Some group members may feel they lack skills or expertise in particular areas, and so may need training, support and mentoring. There may also be assumptions about who is going to do what work, which may need to be explicitly discussed and agreed. Ensuring proper payment of public contributors is an essential element of co-production. If public contributors are going to collect research data, they need appropriate payment, contracts and to follow all research governance processes. Within UK National Health Service (NHS) research that may mean having Research Passports, Good Clinical Practice training and Disclosure and Barring Service checks, if they are working with vulnerable people or children. Not all these processes are designed for public contributors, they can be potentially problematic to navigate, and researchers may need to support public contributors through this process. Table  1 summarises some of the challenges around who is involved, and when in co-produced research, and potential practices and resources that may help.

Power dynamics within health and social care research

Theoretical perspectives on power.

Critical and interdisciplinary perspectives on power can help us understand how to facilitate more equitable partnerships within research and co-produced work (Farr, 2018 ; Oliver and Boaz, 2019 ). The first principle of co-production is to share power through ‘an equal and reciprocal relationship’ between professionals and people using services (Boyle and Harris, 2009 ) (p. 11). However, several authors highlight how co-production can be a rhetorical device to hide power and social inequities (Flinders et al., 2016 ; Thomas-Hughes, 2018 ). Using Lukes ( 2005 ) dimensions of power, Gaventa ( 2007 ) conceives that power can be visible (institutions, structures, resources, rules), hidden (agenda-setting, some voices more dominant within decision-making), or invisible (embedded in beliefs and language).

Focussing first on visible aspects, structural and resource issues can impinge on people’s ability to co-produce, for example funders’ top-down control of research priorities and funding streams, alongside NHS and government political priorities. University research environments can be competitive, ‘unkind and aggressive’, which can crowd out ‘collegiality and collaboration’ (WellcomeTrust, 2020 ), exactly the kind of principles that academics are being encouraged to adopt through co-production. Traditional research frameworks are ill-fitted to the challenges of transforming power and control that are needed for co-productive practice (Lambert and Carr, 2018 ). Power hierarchies are intrinsic to research processes, with people experiencing competing expectations (from public contributors and communities, co-researchers, colleagues and institutions) when working in this way (Lenette et al., 2019 ). How do researchers create co-production circles of equality, reciprocity and share power with public contributors, when often researchers themselves are on temporary contracts and subject to the pressures of publishing, funding, impact and self-promotion within ‘toxic’ (Wellcome Trust, 2020 ) competitive structures? Understanding who is involved and how in decision-making processes (hidden aspects of power) is essential to understand how power is exercised. However, political scientists have long ago illustrated that ‘even the most internally democratic small collectives cannot in fact achieve equality of power in their decisions’ (Mansbridge, 1996 , p. 54).

Scrutinising invisible aspects of power, power can be seen to operate through knowledge, social relations and the language we use (Foucault, 1977 ). The principle of respecting and valuing the knowledge of all (Hickey et al., 2018 ) can be challenging in a healthcare context where a knowledge hierarchy with traditional positivist epistemological assumptions values an ‘unbiased, objective’ position. Co-productive approaches can be grounded in critical theory (Bell and Pahl, 2018 ; Facer and Enright, 2016 ), as opposed to traditional scientific paradigms. The experiential contextualised and tacit knowledge of people who use services, and related qualitative and participatory action methods, can be valued less than knowledge derived from randomised controlled trials (RCTs). This increases the challenge of co-production, as the values and methods of health and social care research may align less with co-production principles. Indeed the very idea that co-production and the sharing of power can actually happen within mainstream University spaces has been contested, with Rose and Kalathil ( 2019 ) arguing that Eurocentric hierarchical institutions that privilege rationality and reason will never be coming from a place where different knowledges are valued equally.

Understanding power in practice

In our project it was difficult to maintain a focus on power relations in the face of a strong tendency to emphasise practicalities, highlighting the difficulties of bringing these issues into clearer focus. An analysis of power dynamics may be an important aspect of a sociological study, but not one considered of such importance within health and social care research.

Focussing first on visible, structural aspects of power, workshop participants discussed their experience that within research that is formally ‘owned’ by a University (i.e., the Principal Investigator (PI) legally responsible for the project is situated within a University) there are associated issues of accountability and formal responsibility for delivering a funded research project. This creates constraints where projects have to deliver what is described rather than what emerges from the co-production process. How a PI works to develop a collaborative leadership style is an under-researched area. Within our own project we all held some unspoken assumptions about leadership and ensuring progress toward our project objectives. Workshop participants highlighted that organisational systems may not support co-production (e.g., finance, human resources and funding systems) so researchers may have to be tenacious to advocate for system changes in order to achieve things, which can be frustrating and time-consuming. For these myriad reasons, realistic resourcing of researcher time for co-production is needed, and many researchers may still end up putting discretionary time into projects to make co-production a success. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders, such risks including practical costs, personal and professional costs to researchers, and costs to stakeholders (Oliver et al., 2019 ).

In relation to decision-making, workshop participants noted that in a pragmatic sense, doing everything by committee and consensus can impede project progress, as no decisions can be made until everyone is present at meetings. Even if decisions are made with everyone present, the power dynamics between people does not necessarily ensure that decisions are shared and agreed by everyone. Within our own project, where we were trying to stick to the principles of co-production, we found that we often had discussions between paid staff members outside of team meetings where thinking was developed and decisions taken. If public contributors are without employment contracts and are not working alongside other staff, there is potential for them to be excluded from informal discussions and decisions in day-to-day tasks. In our workshops there were discussions about whether researchers needed to ‘get out of the way’ and ‘sit on their hands’ in order to make space for others. We discussed how to practically create space for diverse knowledge and skills to be shared and considered whether it is possible to identify shared interests or if there is always a political struggle for power.

Through our project, we reflected as a team how assumptions and practices of how we do healthcare research may be deeply embedded within academic cultures. This links with Foucault’s perspectives on power dynamics (Foucault, 1977 ), every act and assumption we make is imbued with power, which makes power particularly hard to observe, grasp, critique, challenge and transform. We all have subconscious beliefs and work within cultural assumptions, thus continual critical reflective practice, and constant attention to fluctuating power relations is needed (Farr, 2018 ; Bell and Pahl, 2018 ). In workshops, suggested ways to address cultural issues included harnessing the current trends for co-production and using this to start challenging engrained cultures and accepted ways of doing things. Current funder prioritisation of co-production can enable senior researcher support for co-production, as organisational leaders recognise the cultural capital of the word and practices of ‘co-production’. Raising awareness of NIHR and other policy commitments to co-production may be a useful influencing strategy to engage more senior staff, as organisational support can be crucial to facilitate co-production. However, there is always the risk of tokenism and rhetoric (Flinders et al., 2016 ; Thomas-Hughes, 2018 ).

We considered within our project that the relationships between personal experiential knowledge, practice-based knowledge of healthcare staff, and dominant healthcare research need to be better understood if we are to co-produce knowledge together. We reflected on whether the aim of co-production projects is to modify the knowledge hierarchy completely, or to bring in experiential expertise/lived experience to influence the knowledge production process so the knowledge produced is more practical/effective/implementable. This second, more limited aim of making evidence more co-productively, so that it is more useful in practice may be more achievable, whereas modifying the dominant knowledge hierarchy was beyond our scope and influence.

Communication and relationships

The above dimensions of power (Lukes, 2005 ) have been augmented and brought together into a broader theoretical framework (Haugaard, 2012 ), which also incorporates ‘power with’ (Arendt, 1970 ), where emancipatory power can be harnessed through our ‘capacity to act in concert’. Arendt’s work highlights how we can collectively use our power together in more empowering ways. This links with a key principle of co-production, reciprocity, where everyone benefits from working together.

Consideration of what different team members want from working together, and therefore what reciprocity means within a project is needed. We discussed in the interdisciplinary workshops how the kind of benefits wanted by public contributors might include developing skills, confidence and work experience, and meeting such expectations may not usually be considered as research aims. Through our project we saw how co-production is strongly reliant on good communication and relationships. Strong facilitation and chairing skills are needed within meetings, to encourage everyone to contribute and challenge unhelpful behaviours, e.g., using jargon, or one person speaking a lot to the exclusion of others. People in our workshops discussed how some public contributors might need additional support to get more involved, e.g., having pre-meetings to help people get to grips with some information and/or issues, or the provision of materials in different accessible formats. If a co-production project includes people with specific communication needs, the group may need additional time and skills to be able to offer ways of working that are suitable for all. The NIHR is encouraging researchers to involve communities and groups that are often excluded. This means more outreach work to go out and meet with people in the places that they find accessible and comfortable, which can include project meetings in community locations, which may require additional resources.

Developing relationships and trust between team members may take time and requires emotional work. In our workshops we discussed how if the public contributor role includes sharing personal experiences for the benefit of the project, then researchers may also need to drop the ‘professional’ mask and share more personally and expose their own vulnerabilities (Batalden, 2018 ) to support more equal relationships. The challenges of university structural hierarchies were also discussed, including how it was often the responsibility of more ‘junior’ (i.e., lower in the hierarchy) researchers, and often women, to do the relational work (Lenette et al., 2019 ). Senior researchers do not necessarily understand the implications of co-production, for example one person shared how their Principal Investigator assumed that having a public contributor on the team would increase capacity and speed work up, unappreciative of the extra time needed for support, training and communication, including at the weekends, when public contributors could be carrying out work. Meeting the support and learning needs of team members can be challenging, both for researchers and public contributors, as co-produced research may take researchers outside the skills and knowledge usually expected in their professional environment. Even when these needs within a co-production project are recognised, research funders may not understand the resource and capacity implications.

A key element of running a co-production project identified within our work was the ongoing need for time to reflect on group processes to support and maintain different ways of working. Finding time for reflection can be challenging alongside creating an environment where everyone can honestly reflect on what it’s like to be in the group. This requires strong facilitation skills, particularly if there are tensions and conflicts. Addressing communication and relationship challenges are key to developing and sustaining a sense of shared ownership, and we outline some helpful practices in Table  2 .

Reflections on our own attempts at co-production

The conception of our project came initially from conversations between a researcher and public involvement specialist with previous experience as a service user and user-controlled research, wanting to create a space to share interdisciplinary learning between everyone about co-production. It could be argued that as the generation of the idea did not include public members in this first discussion it was not truly co-produced. We acknowledged that there were gaps between the lessons our project produced, and how the project itself had been carried out. It was very challenging to implement all INVOLVE principles (Hickey et al. 2018 ), and we question the extent to which they can ever be fully realised within our current contexts. Practically, we found that we should have allocated more resources to payment of our public contributors to take on additional roles. A focus on relationships and reflection was hard to maintain in the face of a small group trying to deliver an ambitious project to time, alongside other competing commitments. However, in our own reflective discussions we acknowledged that a sense of ongoing commitment to the project from everyone felt key to our group process and successfully getting the project done. In writing this article we met together several times to plan and develop sections, tables and points we wanted to get across. However, the actual writing tended to fall to the academics and public involvement specialist, who had more of the technical knowledge of what was expected. Demands of time, the juggling of commitments, and lack of resources meant that writing the article was not truly ‘co-produced’. Indeed, through the process, a public contributor co-author said they found the reviewers’ comments ‘a bit overwhelming’, with uncertainty of how to approach this. Another public contributor co-author expressed similar experiences with reviewers comments on another paper they had previously co-authored. The publication process can be a challenge to researchers as well, who are more familiar with these traditional academic practices.

Sharing power in the face of embedded hierarchies and inequalities is an obvious challenge for co-production. The gap between co-production principles and practice is a tricky territory. Working with everyone who is interested in an issue, having a focus on meeting the priorities of communities and people we work with, and co-producing all aspects of a project from beginning to end will be difficult to deliver in many projects in health and social care research. Working directly with members of the public is likely to require more adaptation of research project processes and to ‘usual ways of doing things’, alongside additional time and resources. People have different skills and uneven access to resources, and people may need considerable training and support to work together more equally. However, our experience is that funders do not necessarily understand this and doing co-production on a small budget can be particularly challenging. Time investment and the emotional work required to build relationships necessary for successful co-production is both under-appreciated and under-resourced. This reflects disparities in power between those who do this work and those who hold most power in universities. Recognising, recording, documenting and consistently budgeting for this work may help to make it more visible. Timing of funding is also crucial as many research teams do not have access to institutional ‘core’ funding, or seed funding grants, for public contributor involvement at the research development stage. As it is unlikely that most co-production projects will be able to include people with all the relevant perspectives and skills it is important to actively discuss and agree who can be involved and to be open about and discuss restrictions, which can be an act of power in itself.

Oliver and Boaz ( 2019 ) want to ‘open the door’ to more critical multidisciplinary accounts of evidence production and use, highlighting that some people want to direct energies to democratise knowledge for all. Interdisciplinary lessons from this project question the extent to which co-production processes can enable this, given the challenges we have highlighted. We consider that the jury is still out on the viability of co-production in the context of health and social care research. While some (Rose and Kalathil, 2019 ) find the promise of co-production untenable in mental health, we hope we can find a meaningful way forward. However, ‘putting what we already know [about co-production] into practice’ (Oliver and Boaz, 2019 ) can be very challenging. Our own experiences led us to reflect that to be working toward co-production principles means that you have to consistently be challenging ‘business as usual’—we consider a key point here is how to maintain sufficient self and team support to keep trying to do this in practice. Establishing reflective processes that encourage consideration of power issues are likely to be essential. Our approach to help ourselves and others navigate the challenges of co-production has been to identify ways in which groups can start to address power issues as highlighted in Tables  1 and 2 , and to develop practical freely available outputs including a map of resources and reflective questions (Farr et al., 2020 ; Davies et al., 2020 ). We need to understand more about how effective these strategies are, and whether co-production really does make a difference to the use of research. We need to encourage honest reporting of projects, their outcomes and the balance between the benefits and challenges of trying to implement the principles. However, power structures may mitigate against reporting of challenges and problems in research. Other research gaps include understanding what projects will benefit most from a co-production approach. Can co-production deliver more practical and implementable research findings, and if so how? How do we best challenge and change some of the structural inequalities within academia that impede co-production (Williams et al., 2020 )? How do we integrate experiential, practice and research-based knowledge to improve health and social care?

Our experiences on this project highlight the ongoing challenges to truly put the principles of co-production into practice. During this project we used the phrase ‘I am always doing what I can’t do yet in order to learn how to do it’ (van Gogh, 1885 ), to illustrate our limitations, yet continual striving toward an ideal. The quote continues ‘…I’ll end by saying that the work is difficult, and that, instead of quarrelling, the fellows who paint peasants and the common people would do wisely to join hands as much as possible. Union is strength…’ (van Gogh, 1885 ). Forgiving the dated language and connotations of this quote, the principles of joining hands and facilitating union are important co-production ideals that we continually need to remember, relearn and put our hearts into practising.

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Staniszewska S, Denegri S, Matthews R, Minogue V (2018) Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future. BMJ Open 8(7):e017124. https://doi.org/10.1136/bmjopen-2017-017124

Thomas-Hughes H (2018) Ethical ‘mess’ in co-produced research: reflections from a U.K.-based case study. Int J Soc Res Methodol 21(2):231–242. https://doi.org/10.1080/13645579.2017.1364065

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Acknowledgements

This project was funded by the University of Bristol Public Engagement Seed Funding and Research Staff Development fund. It was supported by the National Institute for Health Research (NIHR) Applied Research Collaboration West (NIHR ARC West). The views expressed in this article are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Many thanks to everyone who attended our workshops, got involved in and supported the project to help us develop our resources and training. We couldn’t have done this with you!

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Farr, M., Davies, P., Andrews, H. et al. Co-producing knowledge in health and social care research: reflections on the challenges and ways to enable more equal relationships. Humanit Soc Sci Commun 8 , 105 (2021). https://doi.org/10.1057/s41599-021-00782-1

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Making Sense of Research in Nursing, Health and Social Care

• Pam Moule - University of the West of England, UK
• Description

What is research and how does it work in the context of nursing, health and social care?

Now in its 7 th  edition, this introductory guide provides you with a concise overview of the different research methods and terminology that you will come across when undertaking research in any course related to nursing, health and social care. The book’s easy-to-follow structure takes you from research novice to confident researcher, helping you to make sense of research and understand how it is implemented in healthcare practice.

The new edition includes:

• Updates in line with the 2018 NMC standards, with more information on the impact of GDPR, consent and vulnerable groups, Personal and Public Involvement (PPI), and work-based projects.
• Improved case examples of real research, with more on group work, poster presentations, research output and dissemination, literature reviews, and dissertations.
• Upgraded activities that include reflective exercises, critical appraisal tools, a dissemination plan, and a glossary, all in the book.

This is essential reading for undergraduate and postgraduate students within the health and therapy professions, nurses, midwives, physiotherapists, radiographers, occupational therapists, speech and language therapists, and paramedics.

See what’s new to this edition by selecting the Features tab on this page. Should you need additional information or have questions regarding the HEOA information provided for this title, including what is new to this edition, please email [email protected] . Please include your name, contact information, and the name of the title for which you would like more information. For information on the HEOA, please go to http://ed.gov/policy/highered/leg/hea08/index.html .

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Some books reach their silver anniversary and start to look dated and lose their relevancy. Making Sense of Research in Nursing, Health and Social Care however, has renewed and refreshed at each edition and maintains its applicability for today’s health and social care professionals. 

One of the marks of a good textbook is its ability to appeal to readers across professional boundaries and with varying levels of experience in the topic at hand; Moule achieves this both engaging those new to research as well as providing different insights for those with more research knowledge and experience. One of the stated intentions of the book is to make research interesting and in so doing to help practitioners in their adoption of research and evidenced based practice within their work. Moule achieves this with the use of an accessible writing style which is at once both engaging and thought provoking. I would recommend this book as a must have on the shelf for any student of health and social care be they a first year undergraduate or a more experienced individual engaging in post graduate studies.

Evidence-based practice is crucial for the modern healthcare practitioner. Students can often shy away from the topic of research thinking that the subject is too complex for them. However, the benefits of this book in guiding them through the subject include: easy to read short sections with headings, clear key messages at the beginning and end of each chapter and links to current, credible sources of evidence to expand their reading further. Some students find it difficult to seek out credible secondary sources and this book gives them links to guidelines and reports which would be appropriate to inform their assignment work.

Books about the research process are not rare but few authors can clarify the basics with such ease like Pam Moule. This textbook is easy-to-read, speaks to the research novice in accessible language, and leaves the reader feeling well-initiated in research literacy. Without hesitation I would endorse this textbook for undergraduate health and social care students who will draw from it from the first term of study to the last. The chapters take the reader on a journey through critical reading right through to the fundamentals of research project design, and instill habits of systematic thought and process in all elements of research. Included are a number of helpful links and templates as well as examples to aid visualization of new concepts. This book is the perfect springboard to launch health and social care students into evidence-informed practice without overwhelming and scaring them off from what can undoubtedly become a more complex topic with further reading.

This is an informative and easy to read book, which introduces the students to research and directs them through the research process. I have used previous editions of this book and have it on the reading list for research modules I teach to both undergraduate and postgraduate students. The use of practice examples and scenarios clearly demonstrate research in action in health and social care. This new 7th edition will be a valuable addition to the reading list on my modules.

The previous editions of this book have been a steadfast resource and the ‘go to book’ for all levels of paramedic students studying at undergraduate level. The seventh edition of this book does not disappoint and will be the new ‘go to’ edition for current students who want to understand how to make sense of research in health and social care. The format of the book makes it easy to access the information making it a valuable and informative resource for all students in healthcare settings, and especially useful when undertaking a final project/dissertation.

This book is an excellent text that will provide an invaluable resource to health and social care practitioners who are new to research or those undertaking projects. The detailed discussion of the research process is written in an informative and authoritative way that informs the reader and makes the research process and terminology accessible.

Excellent - I will be directing students to this resource to support learning for enquiries into health and social care research.

Such a clear and easy to read text. A seminal volume!

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Patient-reported outcomes in integrated health and social care: A scoping review

Sarah e hughes.

1 Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK

2 National Institute for Health and Care Research (NIHR) Applied Research Collaboration West Midlands, Birmingham, UK

3 Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK

4 National Institute for Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, University of Birmingham, Birmingham, UK

5 National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

Olalekan L Aiyegbusi

Christel mcmullan.

6 National Institute for Health and Care Research (NIHR) Surgical Reconstruction and Microbiology Centre, University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

Grace M Turner

Nicola anderson, samantha cruz rivera.

8 DEMAND Hub, University of Birmingham, Birmingham, UK

Philip Collis

9 Patient partner, Birmingham, UK

10 School of Social Policy, University of Birmingham, Birmingham, UK

11 IMPACT (Improving Adult Social Care Together), University of Birmingham, Birmingham, UK

Daniel Lasserson

7 Warwick Medical School, University of Warwick, Coventry, UK

12 Department of Geriatric Medicine, Oxford University Hospitals NHS Foundation Trust, Oxford, UK

Melanie Calvert

Associated data.

Supplemental material, sj-pdf-1-shr-10.1177_20542704241232866 for Patient-reported outcomes in integrated health and social care: A scoping review by Sarah E Hughes, Olalekan L Aiyegbusi, Christel McMullan, Grace M Turner, Nicola Anderson, Samantha Cruz Rivera, Philip Collis and Jon Glasby, Daniel Lasserson, Melanie Calvert in JRSM Open

Supplemental material, sj-pdf-2-shr-10.1177_20542704241232866 for Patient-reported outcomes in integrated health and social care: A scoping review by Sarah E Hughes, Olalekan L Aiyegbusi, Christel McMullan, Grace M Turner, Nicola Anderson, Samantha Cruz Rivera, Philip Collis and Jon Glasby, Daniel Lasserson, Melanie Calvert in JRSM Open

Supplemental material, sj-pdf-3-shr-10.1177_20542704241232866 for Patient-reported outcomes in integrated health and social care: A scoping review by Sarah E Hughes, Olalekan L Aiyegbusi, Christel McMullan, Grace M Turner, Nicola Anderson, Samantha Cruz Rivera, Philip Collis and Jon Glasby, Daniel Lasserson, Melanie Calvert in JRSM Open

Supplemental material, sj-pdf-4-shr-10.1177_20542704241232866 for Patient-reported outcomes in integrated health and social care: A scoping review by Sarah E Hughes, Olalekan L Aiyegbusi, Christel McMullan, Grace M Turner, Nicola Anderson, Samantha Cruz Rivera, Philip Collis and Jon Glasby, Daniel Lasserson, Melanie Calvert in JRSM Open

Supplemental material, sj-pdf-5-shr-10.1177_20542704241232866 for Patient-reported outcomes in integrated health and social care: A scoping review by Sarah E Hughes, Olalekan L Aiyegbusi, Christel McMullan, Grace M Turner, Nicola Anderson, Samantha Cruz Rivera, Philip Collis and Jon Glasby, Daniel Lasserson, Melanie Calvert in JRSM Open

Supplemental material, sj-pdf-6-shr-10.1177_20542704241232866 for Patient-reported outcomes in integrated health and social care: A scoping review by Sarah E Hughes, Olalekan L Aiyegbusi, Christel McMullan, Grace M Turner, Nicola Anderson, Samantha Cruz Rivera, Philip Collis and Jon Glasby, Daniel Lasserson, Melanie Calvert in JRSM Open

Background:

Patient-reported outcomes (PROs) have potential to support integrated health and social care research and practice; however, evidence of their utilisation has not been synthesised.

To identify PRO measures utilised in integrated care and adult social care research and practice and to chart the evidence of implementation factors influencing their uptake.

Scoping review of peer-reviewed literature.

Data sources:

Six databases (01 January 2010 to 19 May 2023).

Study selection:

Articles reporting PRO use with adults (18+ years) in integrated care or social care settings.

Review methods:

We screened articles against pre-specified eligibility criteria; 36 studies (23%) were extracted in duplicate for verification. We summarised the data using thematic analysis and descriptive statistics.

We identified 159 articles reporting on 216 PRO measures deployed in a social care or integrated care setting. Most articles used PRO measures as research tools. Eight (5.0%) articles used PRO measures as an intervention. Articles focused on community-dwelling participants (35.8%) or long-term care home residents (23.9%), with three articles (1.9%) focussing on integrated care settings. Stakeholders viewed PROs as feasible and acceptable, with benefits for care planning, health and wellbeing monitoring as well as quality assurance. Patient-reported outcome measure selection, administration and PRO data management were perceived implementation barriers.

Conclusion:

This scoping review showed increasing utilisation of PROs in adult social care and integrated care. Further research is needed to optimise PROs for care planning, design effective training resources and develop policies and service delivery models that prioritise secure, ethical management of PRO data.

Introduction

Recent years have witnessed significant progress in the delivery of integrated health and social care. 1 The move towards integrated care has been motivated by an ageing population with multiple chronic conditions, fragmented and costly care systems, a focus on patient-centred care and empowerment and recognition by service providers of the need for a more joined-up approach to care. 2 Integrated health and social care aims to provide comprehensive and seamless services to individuals through the coordination and collaboration of healthcare and social care services to deliver holistic support. 3 Patient-reported outcomes (PROs), as self-reported measures of how an individual feels and functions, have the potential to play a crucial role in integrated care and adult social care settings. 4 , 5 Patient-reported outcomes provide a means of capturing the unique perspectives of individuals receiving care, enabling them to actively participate in their own care journey. Patient-reported outcomes can bridge the gap between healthcare and social care sectors by capturing shared outcomes related to physical health, mental wellbeing, social functioning and quality of life. By capturing feedback on various dimensions of wellbeing, PROs allow for tailored care plans that meet individuals’ specific needs and goals, enabling more effective, person-centred care. 6 Patient-reported outcomes also support the evaluation of care interventions, providing feedback and identifying areas for improvement. 7 Patient-reported outcomes can promote equity and inclusion, ensuring care services are responsive to the unique needs of individuals and fostering partnership and collaboration, encouraging shared decision-making and giving care recipients a sense of ownership over the care process. 8 , 9 Alignment of PROs with person-centred care, their capacity to capture comprehensive outcomes, and to support service evaluation highlight their potential to shape the delivery of care and support. Despite these potential benefits, current utilisation of PROs in the context of integrated care and adult social care is unclear. We aimed to conduct a scoping review to identify PRO measures used in integrated care and social care settings and to chart the evidence relating to their use, including barriers and facilitators influencing their uptake.

This review protocol was published in BMJ Open . 10 Results are reported in accordance with the PRISMA guidelines for scoping reviews. 11

Data sources and searches

We searched the following databases from 01 January 2010 to 19 May 2023: Medline (Ovid), Embase (Ovid), PsychInfo (Ovid), HMIC (Ovid), Social Care Online (SCIE), ASSIA (Pro Quest) and Web of Science. The authors developed the search strategy (Supplementary Appendix 1) with input from University of Birmingham Information Specialists. We imported search results to Endnote (Version 9.3.3, www.endnote.com ) reference management software for screening.

Study selection

Articles were included if published in English and described studies of any design that reported use of PROs and involved adults (18+ years) who were direct users of integrated care or social care services. We excluded articles reporting only carer-reported or proxy-reported outcome measures and articles reporting studies undertaken with no social care or integrated care involvement. Two researchers (from SEH, CM, GMT, NA, SCR) independently screened articles against the eligibility criteria. We screened titles and abstracts followed by review of full-text articles. Discussion and involvement of a third reviewer resolved disagreements. Eligibility criteria were refined iteratively until we achieved a minimum threshold for inter-rater agreement of 75%.

Data extraction

Piloting/calibration exercise.

A data charting form was developed and piloted on 25 included articles to ensure data capture consistent with review objectives.

Data charting process

Included articles were imported into Covidence software ( www.covidence.com ) for data charting. Thirty-six articles (22.6%) were charted in duplicate by two reviewers independently (from SEH, CM, GMT, NA, SCR) to ensure data were captured consistently by reviewers. 12 Consistent with scoping review methodology, we charted data as reported in the included sources. Study authors were not contacted, and missing information was entered in the data charting form as ‘unclear’ or ‘not reported’. We extracted the following data from all included articles: bibliometric characteristics, study design, study population, setting, PRO measure characteristics, PRO measure use as an intervention, client and system level outcomes as well as implementation barriers and facilitators.

Data synthesis and analysis

Evidence was mapped using descriptive statistics to report bibliometric characteristics of the included articles, study design, population, setting and PRO characteristics. We utilised thematic analysis and the Framework method to synthesise information on the implementation of PROs, coding line-by-line the results sections of any article for which data were extracted during the charting process to the following categories: (1) use of PRO measures as an intervention, (2) client-level outcomes for PRO intervention; (3) system-level outcomes; (4) barriers to PRO implementation and (5) enablers of PRO implementation. 13 , 14 Inductive coding captured additional concepts identified in the data. 12 Quality appraisal, optional in a scoping review, was not undertaken. 11

Lived experience involvement and engagement

People with lived experience of care and support reviewed the study protocol, provided recommendations for search strategy development and reviewed study findings.

Searches identified 3431 records and 159 were eligible for inclusion ( Figure 1 ).

PRISMA flow diagram showing the study selection process.

Study characteristics

Eligible articles (Supplementary Appendix 2) were published between January 2010 and May 2023. The number of published articles increased over time (range = 0–22 articles per year) with numbers declining during the COVID-19 pandemic (Supplementary Appendix 3). Datasets ( n  = 166) from the studies reported in the 159 articles were from 39 countries, with most articles originating in the United Kingdom ( n  = 38, 22.9%) or United States ( n  = 34, 20.5%). When grouped by region, most originated from Europe ( n  = 76 articles, 47.8%). The most frequently reported study designs were cross-sectional studies ( n  = 44, 27.7%), psychometric studies ( n  = 22, 13.8%), randomized control trials ( n  = 19, 11.9%) and cohort studies ( n  = 19, 11.9%) ( Table 1 ). Mean sample size was 880 (median = 192, range = 5–29,935; available for 153 studies in 149 articles).

Study designs reported in the included articles ( n  = 159).

Population characteristics

Participants’ mean age was 72.8 years (median = 77 years, range 35.7–87.6 years; n  = 117 articles), and mean percentage of females was 62.1% (range = 23.4–100; SD = 14.8, 147 articles). Approximately half of the articles ( n  = 87, 54.7%) involved older adults. The definition of ‘older adult’ varied, with 35 articles (22.0%) defining older adults as aged 65+ years. 49 (31.8%) of 154 eligible articles reported participants’ ethnicity or race. Pooling of ethnicity data across included articles was not possible due to reporting variability. Study samples involving specific groups (e.g. adults with intellectual disabilities, adults experiencing homelessness) were younger. Article authors frequently defined the population of interest by service use or place of care (e.g. nursing home residents, recipients of home care services). We were unable to pool co-morbidity data due to article heterogeneity.

Setting characteristics

Participants were community-dwelling in 57 articles (35.8%), residents of long-term care homes (i.e. nursing homes, residential care homes) in 38 (23.9%) articles and recipients of supported living (e.g. independent living and retirement communities) in 9 (5.7%) articles. Five studies (3.1%) were conducted in the context of social care day services. Participants accessed homeless services in five (3.1%) articles, palliative care services in 11 (6.9%) articles and integrated health and social care services in 3 (1.9%) articles ( Table 2 ).

Characteristics of the settings targeted in the included articles ( n  = 159).

Patient-reported outcome characteristics

Patient-reported outcome measures ( n  = 216, Supplementary Appendix 4) were extracted from the included articles. In 157 available articles (text/opinion articles were excluded, n  = 2), the median number of PRO measures reported per article was two (range = 1–13 PROs). Most PRO measures ( n  = 165, 75.7%) were reported in one article, with a median of one article per PRO measure (range = 1–28 articles). Among the most frequently reported PRO measures, the EQ-5D was reported in 28 articles (17.8%), the Geriatric Depression Scales (GDS) was reported in 26 articles (16.6%) and the Adult Social Care Outcomes Toolkit (ASCOT) reported in 25 articles (15.9%). The Patient Health Questionnaire-9 (PHQ-9) appeared in 12 articles (7.6%), and the SF-36 reported in eight articles (5.1%).

Construct coverage

Patient-reported outcomes reported in the included articles were extracted and classified into four construct categories based on classifications proposed by McGilton et al. : functional status, psychological status, health status/symptom burden and quality of life ( Table 3 and Supplementary Appendix 5). 15 Most PRO measures identified from the included articles targeted psychological or social constructs/issues ( n  = 121, 56.0%). Nine PRO measures classified as ‘other’ (4.2%) measured aspects of service provision including health literacy, health needs assessment and care planning.

PRO measures ( n  = 216) classified by outcome construct category.

Functional status

Functional status included PRO measures assessing a person's ability to perform activities of daily living. 16 Thirty-five (16.2%) measures assessed functional status, reported in 43 (27.4%) of 157 available articles. The most frequently reported PRO measures were the Barthel Index ( n  = 7 articles, 4.5% of available articles), and the Index of Activities and Daily Limitations ( n  = 6 articles, 3.8% of available articles).

Psychological status

The psychological status category included PRO measures assessing cognitive status, psychological constructs (e.g. anxiety) or social constructs and issues (e.g. loneliness, participation); 121 (56.0%) PRO measures were reported in 86 (54.8%) of the 157 available articles. The most frequently reported measures were the GDS ( n  = 26 articles, 16.6%), the PHQ-9 ( n  = 12 articles, 7.6%), the Multi-dimensional Scale of Perceived Social Support ( n  = 7 articles, 4.5%) and Centre for Epidemiologic Studies Depression Scale ( n  = 7 articles, 4.5%). The ICECAP-O, a PRO measure of capability wellbeing for older people, was reported in five articles (3.2%).

Health status/symptom burden

Patient-reported outcomes measures of health-related constructs were included in this category; 22 (14.0%) articles reported symptom burden using 15 (6.9%) different PRO measures. The Edmonton Symptom Assessment System was reported most frequently ( n  = 6 articles, 3.8%) followed by the Patient-Reported Outcomes Measurement Information System (PROMIS) ( n  = 5 articles, 3.2%).

Quality of life

About 36 (16.7%) PRO measures assessed quality of life in 98 (62.4%) articles. The EQ-5D, a generic measure of health-related quality of life, was used most frequently ( n  = 28 articles, 17.8%). The ASCOT assessed social-care-related quality of life in 25 articles (15.9%).

Patient-reported outcome data capture and context of use

About 25 (15.7%) articles utilised paper PRO measures, 11 (6.9%) articles used PRO measures delivered electronically (ePROs), one (0.6%) article used a computer adaptive test (i.e. a PRO measure that tailors the questions based on a respondent's answers) and four articles (2.5%) reported use of multiple formats; 114 articles (71.7%) did not report the format of PRO data capture.

Interviews were used to administer PRO measures in 57 (35.8%) articles and self-completion by participants was reported in 28 (17.6%) articles; 22 articles (13.8%) used multiple administration methods while 48 (30.2%) articles did not report method of administration. Commentary articles and articles reporting secondary data analyses ( n  = 4, 2.5%) were categorised as ‘not applicable’.

Patient-reported outcome measures evaluated intervention benefit in 52 articles (32.7%). Interventions were typically health-focussed therapies delivered in adult social care settings to care recipients. Patient-reported outcome measures were used to collect observational data in 65 articles (40.9%). Eight articles (5.0%) were evaluations of interventions that included PROs as a component of the intervention and 34 articles (21.4%) reported on PRO measure development, adaptation and/or validation.

Patient-reported outcome implementation

About 17 (10.6%) included articles were identified from data charting as having data relating to PRO implementation. Thematic analysis of the results sections of these articles yielded five themes: (1) impacts of PROs on users of care and support; (2) system/service-level impacts; (3) barriers to implementation; (4) facilitators of implementation; and (5) feasibility and acceptability of PROs in integrated and adult social care ( Figure 2 ). A narrative synthesis of findings is presented per theme.

Summary of narrative synthesis findings showing key themes relating to the uptake of PRO measures in integrated care and adult social care.

Impact of PROs on people who use care and support services

About 12 (70.6%) of the 17 articles described potential benefits and disadvantages of PROs for users of integrated or social care services. Patient-reported outcomes were viewed positively for care planning. A Delphi review of an integrated participant assessment system for Adult Day Services (ADS) suggested PROs can assist individual care planning, support funding requests, validate caregiver experiences and assure payers of savings. 17 Five articles considered PROs advantageous in care plan development and for understanding the links between quality of life and factors that influence it such as health, level of need and the importance and availability of social support. 18 – 22 Patient-reported outcomes were also viewed positively as means of facilitating person-centred care 21 , 23 by improving communication between care recipients and their care team, increasing user involvement in decision-making and helping prepare for medical appointments. 22 , 24 , 25 Patient-reported outcomes were understood to have potential to support self-monitoring (especially for frail older people and people with multiple, long-term conditions) thereby enabling people to maintain independence in their homes and communities as long as possible. 25 , 26 Patient-reported outcome measures were proposed to have positive impacts in terms of their ability to generate alerts to changes of care recipients’ health status 26 , 27 and, in the case of community aged care assessments in Australia, to raise awareness of recipients’ psychosocial needs. 21 , 24 Monitoring health and wellbeing using PROs was viewed as helpful in supporting ageing populations to live at home. 26 Potential negative impacts included burden associated with PRO measure completion and potential for PRO measures to highlight negative emotions or distressing circumstances to care recipients.. 17 , 21 Use of closed-ended questions to measure PROs was considered to privilege measurement over what matters most for care recipients. 17 , 23

Impacts of PROs on services

In the context of developing a minimum data set for UK adult care homes, PROs, by measuring concepts of importance to residents, were deemed to have potential to support service commissioning and monitoring of care quality, safety and effectiveness. 28 The use of PROs in benchmarking and quality improvement initiatives was highlighted as important in the Australian aged care sector. 29 In England, PROs were used in productivity analyses of adult social care through calculation of ‘quality adjusted’ output using indicators drawn from the ASCOT and the annual Adult Social Care Survey. 30

Barriers to PRO implementation

Perceived barriers included limited ability of care staff to act on alerts triggered by PRO scores and a need for training to enable staff to generate timely, appropriate referrals from PRO data. 21 , 24 , 26 , 27 Data capture and management were also identified as implementation barriers. A pilot study of a nurse-led palliative care intervention in rural Canada identified challenges associated with missing data and longitudinal collection of PROs. 22 In a study describing adaptation of the ASCOT for use in care homes, stakeholder consultation revealed that how and by whom ASCOT data are collected affected subsequent use and perceived trustworthiness of the data. 31 Lack of consistency, heterogeneous instruments, absent infrastructure and siloed care systems were identified as barriers to PRO data accuracy. 17 , 28 Administrative and respondent burden (i.e. on individuals, family members, carers and practitioners) were viewed as barriers to PRO measure use, with time constraints and measure complexity identified as specific obstacles. 25 Relevance of PROs for care recipients and payers was highlighted as a potential barrier by a Delphi panel convened to support the development of an integrated participant assessment system for adult day services. 17

A dearth of PRO measures validated for use in integrated and social care contexts was identified as a further implementation barrier. 23 Noting PROs’ origins in healthcare, a review of social care occupational therapy services suggested the applicability of existing PRO measures for integrated and social care cannot be presumed and measures designed specifically for these settings may be required. 23 Accessibility of PRO measures for care recipients was a further concern. 27 For example, articles describing the development of the ASCOT Easy Read version highlighted potential accessibility and inclusivity barriers such as low health literacy. 27 , 32 An Australian study of aged-care services considered it important for PRO data to be valid appraisals of the impact of care and support services on the health, wellbeing and quality of life of care recipients. 18 , 22 Lastly, reconciling the requirement for broadly applicable measures with the necessity for an individualised approach to capturing PRO data was considered a further challenge to implementation. 17

Facilitators of PRO implementation

Easy-to-use PRO measures that support longitudinal data collection and PRO data capture systems that encourage information sharing and reduce administrative burden were perceived facilitators of their use. Four articles suggested successful PRO implementation would need to give staff more time for direct care activities. 17 , 23 , 28 , 33 Further enablers identified from six articles included: (1) appropriate funding, (2) stakeholder buy-in, (3) training for new employees and managers and (4) having procedures for quality assurance. 17 , 18 , 26 , 27 , 31 , 32 Having access to PRO measures that promote individualised care and support was a key consideration in five articles. 18 , 22 , 23 , 25 , 28 Lastly, use of accessible measures and sensitive use of proxy-report (particularly for people experiencing cognitive impairment) were identified as key to successful and inclusive PRO implementation. 20 , 34

Feasibility and acceptability of PROs

PROs were considered to be acceptable and feasible when used for monitoring and as a feedback intervention, did not disrupt routine workloads, and enabled practitioners to identify when additional support may be required, particularly in situations where needs (e.g. loneliness) were not easily observed. 19 , 20 , 21 , 27 , 31 Recipients of care and support suggested PROs contributed to a sense of control over their health and wellbeing. PRO measures of social engagement were found to support caseload management and aid policy and managerial decision-making in large-scale Australian aged care organisations. 24 , 33

In this study, we carried out a scoping review of the published evidence to explore use of PROs in integrated care and adult social care research and practice. To our knowledge, this review is the first study to provide a broad overview and synthesis of the literature on the use of PROs in these contexts. Excluding the period of the COVID-19 pandemic, the number of articles published per year with an integrated or adult social care focus that reported PROs increased from 2010 to 2023. This trend could be indicative of a move by policy-makers towards integrated care systems, prioritisation of personalisation and a quality-of-life outcomes-based approach to the delivery of care and support. 2 , 35

We conducted a thematic analysis to describe potential impacts of PROs on integrated and social care including implementation barriers and facilitators. The review findings relating to the benefits and implementation of PROs were broadly consistent with the published literature describing PRO implementation in healthcare settings. Where PROs were found to promote communication between social care practitioners and people drawing on care and support, PROs have been found to similarly provide healthcare professionals with a structured method to document a patient's problems and to empower patients to discuss issues and concerns of importance with their healthcare team. 9 Training for time-pressed social care professionals in the administration, interpretation and potential benefits of PROs was another commonly reported barrier consistent with the health literature. 36 – 38 Lastly, data management and electronic data capture systems were reported in several studies as not only barriers but also potential facilitators of PRO implementation in integrated care and adult social care. Several articles endorsed the benefits of PRO integration with electronic records, whilst others raised concerns that standardisation and electronic integration may limit personalisation and be a barrier to achieving equity and inclusion. These findings align with trends reported in the published literature on the use of electronic and remote PRO data capture in clinical trials and routine healthcare settings. 39 – 42 Inconsistent or non-reporting of ethnicity data in the included articles suggested issues with cultural validity and the inclusive, equitable and ethical use of PROs. 40 , 43

Strengths and limitations

We conducted a broad, comprehensive search of multiple databases and utilised the PRISMA guidance for scoping reviews. 11 However, we restricted the review to articles published in English and did not undertake quality appraisal. The latter are potential sources of bias although it should be noted that quality appraisal is not required for scoping reviews. Study heterogeneity and a lack of consistency in the concepts, definitions and terminology used across the integrated care and social care literature, likely arising from fragmentation of service delivery and heterogeneous models of care at regional, national and international levels, made it difficult to ascertain article relevance. We addressed this challenge by using a team of reviewers for screening, consensus discussions and iterative piloting of eligibility criteria until inter-rater agreement met a pre-specified threshold. 11

Implications for research, policy and practice

The review findings suggest there is currently substantial inconsistency in PRO use across integrated and social care settings, with numerous and diverse PRO measures used primarily as research tools. This finding emphasises the importance of conducting further research to establish a common set of PROs for integrated and adult social care research and practice, acknowledging that additional challenges, such as underfunding, workforce pressures and fragmented care systems, are likely to pose further barriers to their implementation. 44 A standardised set of PROs could facilitate a more holistic and equitable approach to care delivery. Core outcome sets already exist for a number of populations likely to be in receipt of care and support (e.g. people living with dementia) and a recent mixed-methods study has explored the feasibility of a core outcome set for adult social care. 45 , 46 Notably, evidence relating to the challenges encountered in integrating PROs as an element of care and support, as found through this review, highlights the necessity for research to establish best practice guidance for the following: (1) integration of PROs into care planning and delivery; (2) effective training for practitioners to utilise PROs proficiently; and (3) formulation of policies that prioritise secure and ethical management of PRO data. Lastly, carer-reported outcomes were not a focus for this review; however, carers are regarded as co-clients in the social care policy landscape. 35 Efforts are required to better understand how carer-focused outcome measures are applied in the carer–care recipient relationship and how they are utilised in relation to PRO measures completed by care recipients. The identification and implementation of measures which capture carer outcomes alongside care-recipient outcomes is recommended to ensure the voices of all individuals impacted by care and support are at the heart of policy and service delivery. 35

This review charted the peer-reviewed evidence for the use of PROs in integrated health and social care. We concluded that although PROs are used as research tools in integrated and adult social care, there is a need for greater coherence. In the context of service delivery, we found limited evidence of implementation, suggesting PROs are currently underutilised. Considerable work focusing on the routine use of PROs across integrated care and social care services is required if their benefits are to be realised by key groups, most importantly, by those individuals receiving care and support, their families and carers.

Supplemental Material

Acknowledgements.

The authors thank SB and AC, Information Specialists, University of Birmingham for their help developing the search strategy and RI and BH for their help with technical editing and manuscript preparation.

Declarations

Competing interests: None.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) West Midlands (NIHR200165). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Ethical approval: This review is a secondary analysis of data from previously published studies; therefore, ethical approval was not required.

Guarantor: SH

Contributorship: MC and DL secured funding; SEH, OLA, MC, DL, PC, JG developed the study; SEH, OLA, PC, MC developed the search strategies, SEH conducted the searches; SEH, GMT, CM, SCR, NA completed title/abstract and full-text screening and data charting. SEH conducted the data analyses and drafted the manuscript. All authors contributed to critical review and editing of the manuscript. All authors approved the final manuscript.

Data availability: Data sharing is not applicable to this article as no new data were created or analysed in this study.

ORCID iDs: Sarah E Hughes https://orcid.org/0000-0001-5656-1198

Olalekan L Aiyegbusi https://orcid.org/0000-0001-9122-8251

Melanie Calvert https://orcid.org/0000-0002-1856-837X

Provenance: Not commissioned; peer-reviewed by Jeppe Eriksen.

Supplemental material: Supplemental material for this article is available online.

Qualitative Research – a practical guide for health and social care researchers and practitioners

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Darshini Ayton, Monash University

Tess Tsindos, Monash University

Danielle Berkovic, Monash University

Copyright Year: 2023

Last Update: 2024

ISBN 13: 9780645755404

Publisher: Monash University

Language: English

Formats Available

Conditions of use.

Table of Contents

• Acknowledgement of Country
• About the authors
• Accessibility statement
• Introduction to research
• Research design
• Data collection
• Data analysis
• Writing qualitative research
• Peer review statement
• Licensing and attribution information
• Version history

Ancillary Material

About the book.

This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the “what” of qualitative research to the “how”, by (1) outlining key qualitative research designs for health and social care research – descriptive, phenomenology, action research, case study, ethnography, and grounded theory; (2) a decision tool of how to select the appropriate design based on a guiding prompting question, the research question and available resources, time and expertise; (3) an overview of mixed methods research and qualitative research in evaluation studies; (4) a practical guide to data collection and analysis; (5) providing examples of qualitative research to illustrate the scope and opportunities; and (6) tips on communicating qualitative research.

About the Contributors

Associate Professor Darshini Ayton is the Deputy Head of the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a transdisciplinary implementation researcher with a focus on improving health and social care for older Australians and operates at the nexus of implementation science, health and social care policies, public health and consumer engagement. She has led qualitative research studies in hospitals, aged care, not-for-profit organisations and for government and utilises a range of data collection methods.  Associate Professor Ayton established and is the director of the highly successful Qualitative Research Methods for Public Health short course which has been running since 2014.

Dr Tess Tsindos  is a Research Fellow with the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a public health researcher and lecturer with strong qualitative and mixed methods research experience conducting research studies in hospital and community health settings, not-for-profit organisations and for government. Prior to working in academia, Dr Tsindos worked in community care for government and not-for-profit organisations for more than 25 years. Dr Tsindos has a strong evaluation background having conducted numerous evaluations for a range of health and social care organisations. Based on this experience she coordinated the Bachelor of Health Science/Public Health Evaluation unit and the Master of Public Health Evaluation unit and developed the Evaluating Public Health Programs short course in 2022. Dr Tsindos is the Unit Coordinator of the Master of Public Health Qualitative Research Methods Unit which was established in 2022.

Dr Danielle Berkovic  is a Research Fellow in the School of Public Health and Preventive Medicine at Monash University in Melbourne, Australia. She is a public health and consumer-led researcher with strong qualitative and mixed-methods research experience focused on improving health services and clinical guidelines for people with arthritis and other musculoskeletal conditions. She has conducted qualitative research studies in hospitals and community health settings. Dr Berkovic currently provides qualitative input into Australia’s first Living Guideline for the pharmacological management of inflammatory arthritis. Dr Berkovic is passionate about incorporating qualitative research methods into traditionally clinical and quantitative spaces and enjoys teaching clinicians and up-and-coming researchers about the benefits of qualitative research.

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• Research article
• Open access
• Published: 06 June 2020

Measuring the benefits of the integration of health and social care: qualitative interviews with professional stakeholders and patient representatives

• Helen Crocker   ORCID: orcid.org/0000-0002-9786-0749 1 ,
• Laura Kelly 1 , 2 ,
• Jenny Harlock 3 ,
• Ray Fitzpatrick 1 &
• Michele Peters 1  

BMC Health Services Research volume  20 , Article number:  515 ( 2020 ) Cite this article

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Integrated care has the potential to ease the increasing pressures faced by health and social care systems, however, challenges around measuring the benefits for providers, patients, and service users remain. This paper explores stakeholders’ views on the benefits of integrated care and approaches to measuring the integration of health and social care.

Twenty-five semi-structured qualitative interviews were conducted with professional stakeholders ( n  = 19) and patient representatives ( n  = 6). Interviews focused on the benefits of integrated care and how it should be evaluated. Data was analysed using framework analysis.

Three overarching themes emerged from the data: (1) integrated care and its benefits, with stakeholders defining it primarily from the patient’s perspective; (2) potential measures for assessing the benefits of integration in terms of system effects, patient experiences, and patient outcomes; and (3) broader considerations around the assessment of integrated care, including the use of qualitative methods.

Conclusions

There was consensus among stakeholders that patient experiences and outcomes are the best measures of integration, and that the main measures currently used to assess integration do not directly assess patient benefits. Validated health status measures are readily available, however, a substantial shift in practices is required before their use becomes commonplace.

Peer Review reports

Transforming the delivery of health and social care is needed to address the growing pressures due to funding constraints and increasing complexity of needs for services [ 1 , 2 ]. In an attempt to address these issues, various programmes to integrate health services have been developed internationally [ 3 , 4 ]. The World Health Organisation (WHO) recognises the importance of integrated care and recently developed a ‘ Framework on integrated people-centred health services ’ calling for fundamental change in the funding, management, and delivery of health services [ 5 ]. In England, many initiatives [ 6 , 7 , 8 , 9 ] have attempted to integrate the health and social care systems, with varying success, and most recently Integrated Care Systems (ICSs) are intended to cover the whole of England, as set out in the UK National Health Service (NHS) Long-Term Plan [ 10 ].

There are many different definitions and concepts of integrated care [ 11 , 12 ]. A commonly referred to definition was developed by NHS England and National Voices, and takes a person-centred approach, “ I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me ” [ 13 ]. While the integration of services can take many forms (e.g. horizontal or vertical), the focus of this paper is the integration of health and social care services. As an example, the Better Care Fund initiative pooled budgets to encourage local health and social care services to work more closely together to deliver ‘better, more joined-up services to older and disabled people, to keep them out of hospital and to avoid long hospital stays’ [ 14 ]. Initiatives funded through this scheme included multi-disciplinary teams, seven-day working, and single points of access.

Integrated care is difficult to achieve, especially in England where health and social care systems have a long standing institutional separation, with distinct funding and accountability arrangements. As such, it is important to be able to effectively evaluate the success of integrated care initiatives, and to achieve this, appropriate measures need to be available. However, questions have been raised about the suitability of existing measures, in particular, their breadth. Where instruments are available, there is a general lack of evidence to support their quality [ 15 ]. Furthermore, additional guidance around which measures and measurement instruments should be used is needed to aid comparisons of the success of strategies [ 16 ].

As integrated care arrangements continue to develop, there is a need to better understand their impact for patients, service users, and service providers. This study aimed to investigate how a diverse range of professional stakeholders and patient representatives viewed current approaches to assessing outcomes of the integration of health and social care. The findings are likely to be of international interest as countries attempt to evaluate the effectiveness of diverse integrated care arrangements and their impacts.

Semi-structured interviews were conducted with stakeholders to explore the value of integrated care, identify aspects for evaluation to determine the success of integrated care, and identify appropriate measures for these aspects. Commonly, integrated care is pursued for patients and service users, without adequately acknowledging the potential contributions that they can make [ 17 ]. In an attempt to overcome this, patient representatives were included as active participants in this research, alongside professional stakeholders.

Recruitment

Professional stakeholders were recruited through publically available information of national and regional NHS and social care representative bodies and stakeholder organisations, existing networks, and referral (i.e. snowballing) from those contacted or recruited using the above methods. Potential participants were selected based on their interest in and knowledge of integrated care services, and of policy/strategy and implementation in relation to integrated care. A purposive sampling strategy was adopted to recruit diverse respondents across the health and care sectors.

Patient representatives were recruited through the Quality and Outcomes of Person-Centred Care Policy Research Unit’s (QORU) Public Involvement and Implementation Group, a strategic group which oversees public involvement in QORU projects and includes members of the public.

Forty stakeholders and members of the Public Involvement and Implementation Group were sent an email invitation and participant information sheet about the study. Stakeholders were sent a reminder email where no response was received. We aimed to conduct 25 interviews across patient representatives, health and social care policy makers, system stakeholders and professionals. It was anticipated that this sample size would enable a range of perspectives regarding integrated care and its measurement to be captured thus providing detailed information about the evaluation of integrated care, the challenges and issues.

Ethics approval was granted by the University of Oxford’s Medical Sciences Interdivisional Research Ethics Committee (Reference: R59996/RE001). All participants provided written consent via a secure online consent form prior to taking part.

Participants

Twenty-five people (19 professional stakeholders and 6 patient representatives) took part in a qualitative interview. Nineteen stakeholders responded to the email invitation and were interviewed. The remainder did not respond ( n  = 14), could not be reached (e.g. undeliverable email) ( n  = 6), or were too busy to participate ( n  = 1). Seven patient representatives contacted the research team expressing an interest in participating in the study, before recruitment was stopped due to sufficient numbers being reached. Six patient representatives were interviewed. The average duration of interviews was approximately 30 min. The roles and affiliations of professional stakeholders are summarised below (note that three stakeholders also held clinical roles):

Two senior representatives of NHS England;

Four stakeholders in lead roles within Clinical Commissioning Groups (bodies responsible for the purchase of local health care services);

Three stakeholders in lead roles within other NHS bodies (e.g. Health and Care Partnerships);

Four senior representatives of local authorities (bodies responsible for the provision of local public services, including social care). One of these representatives held a joint role with a Health and Care Partnership;

One senior representative from the Local Government Association;

Four senior representatives of health and/or care focussed charities;

and a senior academic working in the field of integrated care.

A semi-structured interview guide (see Table  1 ) was developed following a review of relevant literature [ 18 ], and focused on the benefits of integrated care and how it should be evaluated. The guide was tested in two mock interviews (led by HC and LK), amended, and further refined after the first few interviews to allow broader exploration of available metrics for integrated care, and their selection. All interviews were conducted over the telephone between November 2018 and January 2019 (by HC, JH, or LK) and audio-recorded with the participants’ consent.

Interviews were transcribed verbatim by a professional transcriber and checked against the audio-recording by a researcher (HC or LK), with corrections made as appropriate. All transcripts were anonymised.

A framework analysis was conducted in five stages: familiarization; identifying a thematic framework; indexing; charting; and mapping and interpretation [ 19 , 20 ]. The thematic coding framework was developed following familiarisation with the data set, and broadly followed the interview guide. The framework was discussed and agreed upon by all authors. Next, the data was indexed using NVivo 12 software. Finally, a chart summarising the relevant data for each case against each qualitative theme was developed to aid interpretation.

Quotations from professional stakeholders are shown as “S” followed by an ID number. The following hierarchy of descriptors can be referred to when interpreting the results:

Most or majority (≥75% of participants)

Many or often (51–74% of participants)

Some or several (26–50% of participants)

A few or limited (≤25% of participants)

Three overarching themes arose from the data, and they are discussed in turn below. The first theme is concerned with how participants viewed integrated care and its benefits. The second theme focuses on potential measures for integrated care. The final theme explores some broader contextual and methodological considerations surrounding assessing benefits of integration initiatives.

Integrated care and its benefits

When asked to define integrated care, the majority of stakeholders first and foremost defined it from the perspective of the patient or service user as an approach that coordinates services around the individual to fulfil their needs. Most went on to state that a key purpose of taking a person-centred approach to integrated care is to achieve better outcomes for patients and service users, for example, keeping people in their homes for longer, maintaining independence, reducing unnecessary admissions, improving health outcomes, and quality of life. In addition to improved outcomes, the potential for integrated care to provide patients with a better experience of care was also raised by stakeholders. Examples given of what a better patient experience may look like included: improved access to services, smoother transitions between services, increased involvement in decision-making, receiving the right care at the right time in the right place, and telling ‘their story’ less frequently.

Secondary to the person-focused definition offered above, some stakeholders provided a systems-focused perspective of integrated care, as an activity that coordinates or brings services together to provide ‘joined-up’ or ‘seamless’ care. Some outlined this vision in greater detail, specifying the services involved in integration (e.g. health, community, voluntary, and social care), as well as detailing the mechanisms by which integrated care can be achieved, for example, vertical or horizontal integration, and multi-disciplinary teams (MDTs). It is important to note that most stakeholders provided a systems-focused perspective in addition to the person-centred definitions given, outlining the structures and processes necessary in order to achieve better outcomes and experiences for patients. For example, one stakeholder spoke about how improvements to the structure of the health and care systems, specifically the integration of IT systems, could benefit patients:

“We don’t have a single joined up system. We don’t yet really have shared information systems which are incredibly important. And they're incredibly important enabler for integration. And so that’s what it's about for me – joining up information, making sure that care professionals have access to the right levels of information that they can use to make joint decisions that are with the patient as well, to improve the patient and service user outcomes.” (S10, Programme Lead, Clinical Commissioning Group)

Although structures and processes were discussed, the benefits of integrated care were generally coached in terms of the patient or service user. A few stakeholders further emphasised a person-centred approach by specifically stating that the end goal of integrated care is not the integration of structures, but rather the outcomes that can be achieved:

“It's [integrated care] about the experience and the improved outcomes that it brings to people, that is what it's all about; it's not about structures … it's about improving people's health and well-being, it's about closing health and inequalities, it's about keeping people well at home, giving them a better, more co-ordinated experience of care, about helping them to help themselves, about using, all of the assets in a place to support the community to live as happily and independently and safely as they can. And so that’s what integrated care is to us. It's not a thing in itself; it's the outcomes that it achieves.” (S9, Senior Advisor, Local Government Association)

The benefits of integrated care to service providers were also discussed, albeit less than the benefits to patients and service users, with two key areas of benefit raised. Firstly, many stated improved service efficiencies as a key benefit, achieved through more efficient pathways, reduced duplication of work (e.g. reduced number of assessments), reduced admissions, and an improved ability to make decisions, plan, and co-ordinate care. Secondly, the potential for integrated care to reduce costs was often discussed, although there were discrepancies between stakeholders regarding whether savings could be realised, with several acknowledging that this was not a given and that current evidence to support this was limited. In addition to these two key areas, a few stakeholders also highlighted the potential for integrated care to improve the experience and retention of staff.

Providing a definition of integrated care was more challenging for patient representatives. However, of those who were able, they provided similar albeit less detailed definitions than professional stakeholders, focused on bringing services together for the benefit of the patient:

“different organisations getting together … clinicians, carers, community people, researchers, research scientists, sharing knowledge and sharing anything that might be relevant to the patient that might improve the outcome to a patient” (Patient Representative 3)

Furthermore, patient representatives also provided similar descriptions of the benefits of integrated care, with a particular focus on streamlining processes to benefit the patient; for example, having one point of contact and being asked fewer times for the same information.

Measures of integrated care

All professional stakeholders discussed how they thought integrated care should be evaluated, both in terms of the aspects to evaluate and how best to measure those aspects. Several professional stakeholders spoke about the difficulty of measuring the impact of integrated care, particularly with regards to the challenges faced when selecting appropriate measures, and assessing the benefits to patients and service users. Under current arrangements, with diverse measures employed across the system, a few stakeholders mentioned that it was impossible to draw general conclusions about the effectiveness of alternative models of integration. As one might expect, patient representatives discussed the measurement of integrated care in much less detail than professional stakeholders. While various system metrics were raised as possible measures of integrated care, patient representatives generally thought evaluation should focus on patients’ experiences of care, and any improvements in patient outcomes.

Three broadly distinct types of measure of the benefit of integration were discussed: system effects, patient experience and patient outcomes.

System effects

System metrics were commonly referred to by stakeholders when discussing measures of integrated care, of which, delayed transfers of care (DTOC), number of emergency admissions, and length of stay, all of which relate to hospital care, were among those most frequently mentioned. While there was great awareness among stakeholders of metrics used to assess system outcomes, and their value acknowledged, many felt that evaluations of integrated care focus too heavily on system effects. Concerns were raised that such an approach is too narrow and does not necessarily effectively evaluate the broader impact of integrated care and the benefits to patients. In particular, some regarded these metrics as ‘blunt instruments’ that do not capture the true impact and benefits of integrated care as defined by stakeholders, i.e. whether system changes are improving patient experiences and outcomes:

“The outcomes often associated with integrated care are hardcore metrics like reductions of emergency admissions, unplanned admissions, length of stay and that sort of thing … these are the metrics that they use to measure integrated care against, don’t actually demonstrate an effective connection, and that’s because those metrics in themselves aren't particularly sensitive to what is the aspiration of integrated care.” (S11, Senior Academic, University)

Vast awareness and use of system metrics is, in part, likely explained by the requirement of regulators to collect data on certain system outcomes, for example, Delayed Transfers of Care (DTOC). An Assistant Director at a local authority questioned this focus:

“The sign of a good performing system is that you have low levels of DTOC … yes, it's nice to have a low level of DTOC, but that still means that the person's been in hospital. They could have been in hospital for three or four weeks. Is that necessarily a good experience for them? … Sometimes we latch onto a particular measurement and then say, "Oh yeah, your system's performing well because you’ve got a really low DTOC." Well, not if you’ve got really high non-elective admissions and really high readmissions and really high residential admissions … that tells me that the system's not operating as well as it could.” (S4, Assistant Director, Local Authority)

Patient experiences

The majority of participants spoke about the need to measure patients’ experiences, with a few specifically extending this to include the experiences of carers and / or family members. Furthermore, several thought it also important to measure the experiences of the workforce.

Patient representatives frequently referred to experiences of care, talking about their own experiences from a patient or carer perspective, as well as referring to the experiences of others (e.g. family, friends and neighbours). One patient representative described the experience of their neighbour:

“She suffered a mental health breakdown with two young children, and the [city] social services department took six months to assess her. And even then they didn’t complete the assessment because the lady was homeless. And they moved her to temporary accommodation into the neighbouring borough of [location], where they had to start the whole process again because they said they'd lost the papers … So, there's no communication between one department and another department.” (Patient Representative 1)

This focus reinforces the stakeholders’ views of the importance of measuring patients’ experiences of care.

Some difficulties around measuring patients’ experiences were raised by stakeholders, for example, often patients and service users provide a positive report of their care despite negative aspects occurring, which often only come to light during subsequent discussions with the patient.

Patient outcomes

In general, stakeholders discussed patient-related outcomes in broader terms than they had discussed system effects. For example, some stakeholders advocated the importance of patient outcomes but generally without specificity or detail. This may be an effect of system outcomes being measured more frequently, and therefore, system metrics being better known to stakeholders than patient outcome measures. This was not true of all, with a few participants able to discuss dimensions to be measured (e.g. wellbeing, functionality, and pain), and tools that could be used to elicit such data, in much greater detail.

Several stakeholders called for a wider “ basket of measures ” to broaden measurement beyond system effects when evaluating the success of integrated care programmes. A few felt that measuring patient outcomes should be central to evaluations, for example, a Senior Associate of a charity stressed that “fundamentally, the best judge of a service or a package of services, is from the perspective of the people experiencing care” (S1, Senior Associate, Charity).

Overall, very few specific health indicators were referred to, with life expectancy, functionality, and dental decay among those mentioned. The majority of discussion was about patient- or carer- reported outcomes. Quality of life, well-being, or specific aspects of quality of life, such as pain, anxiety, and depression were raised by the majority of stakeholders as aspects of integrated care that should be evaluated. The value of measuring aspects such as these was highlighted in an example shared by a Senior Manager, who described an instance where a GP visited an elderly man with multiple conditions nearing end of life:

“And the GP thought, 'Well what can I do for this guy?' and he... so he just asked him. He said, "I'd really like my beard trimmed." So, he kind of got a barber to come round and trim his beard and he said it kind of transformed this guy's kind of, you know, you know, made him feel so much better. And his blood pressure was lower and things like that. We don’t... but we don’t kind of pick that up. I think all you'd pick up was the fact that whether the GP went there and how long he was there for, or she was there for, you know.” (S6, Senior Manager, County Council)

However, a few held some reservations about collecting such data due to its subjective nature, and problems with measurement (e.g. comparability):

“I might say my quality of life's really high and I enjoy my life; I could live in absolute squalor. And other people would say my quality of life is very poor. So, I think it's more difficult around quality of life … I think it is right that we ask the question, but I think it's one of those ones that you need to think about that is subjective.” (S4, Assistant Director, County Council)

Patient-reported measurement instruments

When asked about available patient-reported measures for assessing integrated care, broadly speaking, stakeholders working at a national level (e.g. national charities) and in academia were far more familiar with specific measures than those working at a local level (e.g. County Councils and Clinical Commissioning Groups). Measures named, included, the Patient-Centred Coordinated Care Experience Questionnaire (P3CEQ), the Friends and Family Test, the Patient Activation Measure (PAM-13), the Warwick-Edinburgh Mental Well-being Scale (WEMWBS), and the EuroQol 5 Dimensions (EQ-5D). None of the measures named were strongly advocated by the professional stakeholders. Although patient representatives did not specifically name any patient-reported measurement instruments, many had previously seen or completed patient-reported outcome or experience questionnaires as part of their care. One patient representative described their experience:

“I have endless review questionnaires following interventions about, you know, pain scores and all that sort of stuff. Can we do this, can we do that more, you know, was it better, was it worse, was it just the same. But no, I personally, have a bit of trouble with those as a patient because ticking boxes and being a human being don’t seem very compatible to me, but I do understand that it's the way we measure things. And I know you get something from it which translates into something which will help me.” (Patient Representative 4)

Contextual considerations

In addition to discussing potential measures for integrated care, stakeholders also raised some additional factors for consideration when evaluating integrated care programmes. Both professional stakeholders and patient representatives raised queries around the purpose of data collection in health and care settings. One patient representative discussed the lack of transparency with patients regarding the purpose for which data is collected, referring to “ endless surveys ” that go “ into a dark hole and you assume that nobody ever reads” (Patient Representative 4). Several professional stakeholders called for greater clarity around why data is being collected and how that data will be used:

“The other thing that worries me is are we using that data? … it's very fashionable to talk about, you know, people's mental health and all this sort of stuff, so people feel that they ought to collect it, but people should only be collecting it if they're going to use it, you know. If, you should only be asking these people these questions if they’ve got a plan for that data. If they just want to kind of want to put it on a database somewhere and forget about it then it’s unethical.” (S6, Senior Manager, Council)

A further issue, raised by a few stakeholders, was around the tensions between collecting data for use at a local or national level. While stakeholders recognised the need to collect data at a national level to allow comparisons to be drawn between providers, there were concerns that national level data lacked local relevance, and necessitated a loss of local data ownership. An Assistant Director at a Council questioned the value of nationally imposed metrics:

“We are supposed to work in an integrated way and cooperate, but I think the culture that underpins that has been one of intimidation from the top. An insistence of further solutions by certain providers being delivered, and whether you’ve got a top driven set of metrics that have come from NHS England and don’t reflect the reality of local government funding. Those metrics become either as just a stick to beat people with. And it doesn’t help the integration of human beings working together on the ground; it gets in the way.” (S15, Assistant Director, Council)

Qualitative methods

Qualitative methods of evaluating integrated care were increasingly being used or advocated by many stakeholders in order to overcome difficulties they had experienced with quantitative evaluation of integrated care initiatives. A senior academic discussed their qualitative approach to evaluation:

“We get people to define what is it you wanted to get out of it and did integrated care actually help you? So, it's impossible to plonk it on a politician's desk and say, 'You know, with this integrated care initiative, X number of outcomes were achieved,' because it's not like that. Integrated care is much more evaluation of a process. And individually, did the processes actually facilitate some kind of improvement?” (S11, Senior Academic, University)

Stakeholders often discussed the use of qualitative methods to capture data about the benefits of integrated care from the patients’ perspective. Some advocate these methods as a way of hearing the stories of patients. Despite discussing the benefits of a qualitative approach, it was acknowledged that there is still a need for good metrics with which to evaluate and report on integrated care.

“Asking the person at the end of it how integrated their experience has been and then acting on what they tell us. It's experiential, it's qualitative and it's not going to be easily captured and quantified and reported upon.” (S15, Assistant Director, Council)

It has to be noted that while many stakeholders referred to “ qualitative ” approaches, it was evident that a few were in fact referring to patient experience surveys rather than qualitative methodological approaches, such as interviews and focus groups.

In this diverse sample of professional stakeholders and patient representatives with a range of interests in the process of integrating health and social care, there was striking optimism that increased integration would eventually yield substantial benefits to patients and users of services. There was consensus that currently health and social care services are a very long way from being integrated and that the main measures used to assess progress, such as delayed transfer of care, while important, do not directly address patient benefits.

When invited to consider how benefits of integration should be assessed, participants commonly referred to broadly expressed dimensions such as well-being and health-related quality of life. However such constructs were generally seen as difficult to operationalise and little specific evidence was cited of integration being assessed against outcomes such as well-being. Reference was also made by some participants to the potential value of capturing patients’ experiences of services, i.e. how services were experienced in terms of being joined up and coordinated. For some, such responses to integrated care would best be captured by qualitative and narrative methods.

Although there was broad agreement that progress in integration would be best captured through the measurement of experiences and outcomes (e.g. dimensions such as well-being), no single measure was widely cited. However, individuals were able to cite specific measures such as the Patient Activation Measure or EQ-5D as potentially relevant. Furthermore, stakeholders generally discussed the applicability of measures in broader terms rather than considering their relevance to specific groups.

Related to the lack of agreement about specific measures of outcomes of integration was widespread uncertainty as to where responsibility for outcomes assessment was best located, at local or national level. This uncertainty reinforced the sense that no shared metric could easily emerge that would inform the system as a whole of benefits of initiatives to develop integrated services.

The development of measures of health status, often referred to as patient-reported outcome measures, has been hailed as the most important scientific break-through in fifty years, permitting the evaluation of services by means of broad measures of health as viewed and valued by patients and the public [ 21 ]. There are now readily available validated measures of health intended to capture the benefits of system innovations in health and social care [ 22 , 23 ]. There are, in addition, attempts to define sets of indicators to assess and monitor integrated care [ 24 ], and logic models that delineate relationships between systems and outcomes [ 25 ]. It is clear that there still remains a substantial gulf between health services research and the world of everyday service providers, managers and commissioners, which is holding back the use of evaluative methods to inform innovation [ 26 ]. One aspect of the gulf is limited awareness of potentially relevant patient-reported outcome measures and their application.

One way in which this gulf could be narrowed is through the development and promotion of a core measurement set for integrated care, i.e. a standardised set of measures that represent the minimum group of processes, structures, and outcomes that should be collected and reported for all integrated care initiatives. This type of approach follows that set out by initiatives such as the International Consortium for Health Outcomes Measurement (ICHOM), which focuses on the development of Standard Sets for use by health care providers [ 27 ], or the Core Outcome Measures in Effectiveness Trials (COMET) initiative, which aims to standardise measurement across clinical trials for a specific area of health or health condition [ 28 ]. At the heart of this type of approach is the identification and agreement of what matters most to patients and service users in terms of outcomes from services, together with the identification and agreement about best available specific measures of the most important outcomes.

A potential weakness of these conclusions is the sample size of respondents recruited to the study. An enormous array of professional, managerial and patient groups have an interest in the broad issue of integration of health and social care and the current study cannot claim to have fully sampled this diversity of views. The recruitment of professional participants with in-depth knowledge of integrated care led to a sample of professionals in more senior positions. However, further work would benefit from the inclusion of professionals of varying levels of seniority to capture a wider range of views. Patient representatives were less familiar with the term ‘integrated care’ and its definition, with some finding it difficult to answer some of the questions as a result. However, it is essential to include patient representatives, and further work is needed to explore how best to overcome terminology and conceptual barriers to participation. Interviews were also pragmatic and restricted in time to accommodate respondents’ time constraints.

This study makes an important contribution to understanding professional and lay stakeholders’ views on capturing the benefits of integrated care, but further work is needed to better understand the challenges of measuring health outcomes and patient, informal carers, and staff experiences as part of integrated care evaluations. Patients and informal carers should be central to the development or selection of measures and indicators to ensure that they truly reflect any differences that integrated care has made.

The challenges of measuring integrated care are well documented. In this paper, we sought the views of professional stakeholders and patient representatives about how best to measure the integration of health and social care, and the benefits of integrated care approaches. Stakeholders primarily defined integrated care and its benefits from the patients’ perspective, however, there was consensus among stakeholders that there is not yet enough focus on patient benefit. There is potential for this to be overcome as validated patient-reported measures of health are available. However, there is currently limited awareness of measures of key constructs such as wellbeing among stakeholders, and therefore considerable scope for developing consensus on optimal measures. The study provides clear evidence that the prospect of directly assessing patient benefits of the integration of health and social care services is feasible, although still quite distant.

Availability of data and materials

Due to ethical concerns, the interview transcripts cannot be made openly available.

Abbreviations

Core outcome measures in effectiveness trials

Delayed transfers of care

EuroQol 5 dimensions

International consortium for health outcomes measurement

Integrated care systems

Multi-disciplinary team

National health service

Patient-centred coordinated care experience questionnaire

Patient activation measure

Quality and outcomes of person-centred care policy research unit

Warwick-Edinburgh mental well-being scale

World health organisation

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Acknowledgements

We would like to thank the professional stakeholders and patient representatives for participating in the qualitative interviews.

This paper reports independent research funded by the Policy Research Programme (PRP) in the Department of Health and Social Care England, firstly through the Quality and Outcomes of Person-centred Care Policy Research Unit (QORU), and subsequently the National Institute for Health Research (NIHR) Policy Research Unit (PRU) on Quality, Safety, and Outcomes (QSO) (PR-PRU-1217-20702). This study was also funded by the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Oxford at Oxford Health NHS Foundation Trust. The funders set only broad areas for long term programmes of research, such as quality and outcomes of health and social care services. They were not involved in the research question, design, data collection and analysis, manuscript preparation or the decision to submit the manuscript for publication. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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RF and MP conceived of the study with all authors contributing to its design. HC, JH, and LK collected the interview data. HC led the analysis of interview data, with the support of RF and MP. HC led on drafting the manuscript with input from RF, JH, LK and MP. All authors have critically reviewed and approved the final version of the manuscript.

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Crocker, H., Kelly, L., Harlock, J. et al. Measuring the benefits of the integration of health and social care: qualitative interviews with professional stakeholders and patient representatives. BMC Health Serv Res 20 , 515 (2020). https://doi.org/10.1186/s12913-020-05374-4

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Building a better understanding of adult social care

Read the full collection: rethinking health and care systems.

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• Peer review
• Jon Glasby , director 1 ,
• Clenton Farquharson , chair 2 ,
• Liz Hanson , professor of caring sciences 3 4 ,
• Mirella Minkman , chief executive 5 6
• 1 IMPACT, University of Birmingham, Birmingham, UK
• 2 Think Local Act Personal Partnership Board, London, UK
• 3 NKA (Swedish Family Care Competence Unit) Kalmar, Sweden
• 4 Linnaeus University, Sweden
• 5 Vilans (Dutch Institute for Long Term Care), Utrecht, Netherlands
• 6 School for Business and Society, Tilburg University, Tilburg, Netherlands
• Correspondence to: J Glasby J.Glasby{at}bham.ac.uk

Jon Glasby and colleagues suggest short and long term measures to tackle the invisibility of adult social care

In December 2022, the UK House of Lords Adult Social Care Committee argued that adult social care ( box 1 ) is largely “invisible”: something that happens behind closed doors, that is about “them” rather than “us,” and that is poorly understood by the public, the media, and policy makers. 1 Among many examples of this from their report was the view of Jeremy Hunt, former secretary of state for health and social care, that the invisibility of adult social care is “deeply entrenched” in our society. Another example was a November 2021 survey including 1561 unpaid family carers in the UK that suggested over 90% feel ignored by government. 2 A written submission from the Health Foundation to the committee reported that members of the public had a limited understanding of social care, had not thought about their own future care needs, and wrongly thought that future care will be funded through taxation. 1 3

What is adult social care?

Adult social care means the practical care and support that disabled and older people draw on to live their lives. It can include assistance with activities of daily living such as getting up/washing/getting dressed/eating/going to the toilet, as well as support for unpaid carers. While these are often associated with particular service models (home care, residential care, and so on), many countries enable people to choose how funding is spent on their behalf, playing an active part in co-designing their own support.

In the view of the committee, this results in services that are underfunded, a workforce that is undervalued and underpaid, and a system that is only really seen in terms of the impact it has on the health service, hardly ever in its own right. Although social care has come to national attention in recent years, the focus has been on the cost of care homes and paying for care for those who need it and not on the intrinsic value of enabling good lives. 1

We argue that these longstanding issues were particularly exposed during the pandemic, with tragic consequences. While some of our proposed solutions to tackling the invisibility of social care are more immediate, practical actions, others entail long term social, cultural, and political change. In making this case, we focus on insights from England, the Netherlands, and Sweden, selecting these to include a range of systems, including high tax or publicly funded Scandinavian services, more insurance based approaches, and a more mixed economy of care.

Focusing on health to the detriment of social care

During the pandemic, the immediate focus in many countries was on acute hospital care, with a tendency to overlook adult social care. 4 This had tragic consequences for many people’s lives and the wellbeing of care workers. 5 6 Whereas systems were rapidly put in place to supply hospitals with extra funding and as much personal protective equipment (PPE) as was available, social care staff were initially almost entirely neglected. 7 8 Restrictions on visitors to care homes also meant that many residents, some with dementia and near the end of their lives, were unable to see loved ones. 9

In England, the government was subsequently severely criticised over an early decision to discharge people from hospital to care homes without initially testing for covid-19, inadvertently spreading the virus to particularly clinically vulnerable populations. 5 10 In Sweden, in contrast to many other countries, the government’s initial emphasis was largely on advice and guidance, leading to greater degrees of personal freedom and a preference for voluntary social distancing rather than compulsory “lockdowns.” However, they were criticised for doing “too little, too late” in terms of enacting measures to sufficiently protect frail older people and other at-risk groups. 11 In the Netherlands, the first priorities were the availability of hospital and intensive care unit beds, making PPE available in clinical settings, and overall mortality rates, and not the quality of life of frail or disabled people in the community or the wellbeing of often unprotected care workers. 12

Longer term neglect

This prioritisation of health over social care was partly the result of an understandable desire to protect hospital services and intensive care in an unprecedented crisis. However, deep down, it was also to do with a broader failure by policy makers and by society as a whole to understand and value social care in its own right. 1

In England, the House of Commons Public Accounts Committee argued that years of inattention, funding cuts, and delayed social care reforms were compounded by the government’s slow, inconsistent, and, at times, negligent approach to giving the sector the support it needed during the pandemic. 5 Examples of this neglect included the 25 000 people discharged from hospital to care homes without first being tested for covid-19 and delays in producing an action plan for social care (which came some four weeks after guidance had been produced for the NHS). 5

In Sweden, covid-19 shone a spotlight on existing problems, such as chronic underfunding, fragmentation, understaffing, insufficient education and training, inadequate managerial and medical support, and poor terms of employment. 11 13 14 For example, one quarter of the care workforce are employed by the hour, with staff sickness or self-isolation leading to even greater use of casual workers (often with less or no formal training). 14 There was a scarcity of PPE, especially in the first months, and care home residents, home care recipients, and care staff were not initially prioritised for testing. More than one third of care homes reported lacking preconditions to provide individual assessment and treatment for residents with covid-19. 14

In the Netherlands, the national expert committee advising the government was initially dominated by epidemiological and economic perspectives, with less social science input. 12 15 This meant that the focus was often on clinical issues, rather than broader impacts, such as the negative effects of multiple lockdowns on older or disabled people living alone or on youth mental health. As a result, there were considerable shortages of PPE for home care and nursing home staff—even greater than those in hospital services. Also, the national expert committee did not seem to discuss issues such as the best way to balance prevention of infection with the importance of (family) contact for people in care homes (particularly at the end of life). The overall situation was made worse by staff shortages, poor working conditions, and a lack of emphasis on infection prevention in such settings in the years before the pandemic. 12 15 16

As the pandemic progressed, there was greater recognition by policy makers, the media, and the public of the challenges facing adult social care. 5 However, most policies and media accounts tended not to consider social care in its broadest sense and on its own terms, focusing on parts that affect the health service, such as care homes and services for older people, and overlooking the experiences of disabled people of working age or on community services that support people to live independently in their own homes. 6 7 This led to care packages being reduced or cancelled, buildings such as day centres or respite units being closed, and people employing their own personal assistants unable to source PPE 7 —much of which initially went unreported and so was probably not apparent to the general public.

Even when policy makers became increasingly aware of these issues, action was limited by a lack of understanding of the nature of the sector. For example, English care services are provided by around 17 900 private, voluntary, and public organisations across 39 000 sites, 17 many of which are encouraged to compete with each other for public service contracts. This is different from the health service, where providing PPE (as one example) to large, publicly owned hospitals—while still challenging—is relatively straightforward in comparison.

Valuing social care in its own right

Adult social care funding is not “dead money” that governments have to spend to meet the basic needs of disabled and older people, but a form of social and economic investment we make in ourselves as a society. 18 19 Raising its profile defies simple answers, but possible solutions might entail a mix of short term, practical actions, alongside longer term social, cultural, and political changes.

Many adults have cross cutting health and social needs that span traditional professional and organisational boundaries. Raising the profile of adult social care within health services would therefore be an important first step. All health professionals can commit to increasing their personal understanding of social care and to building broader relations beyond the walls of their workplace. In practical terms, this might include a greater focus on interprofessional education in pre-qualifying and post-qualifying training programmes, 20 and medical revalidation processes. However, it might also entail individual professionals taking responsibility for their own development, above and beyond the formal mechanisms in place ( box 2 ).

Moving beyond professional boundaries for a better understanding of each other’s roles

Although only an anecdotal example, a powerful illustration of looking beyond our own professional boundaries is provided by a senior geriatrician who thought he knew little about the community services to which he discharged people from hospital. He therefore took a week’s leave and shadowed local home care workers. He was amazed by the complexity of needs which these workers manage on a daily basis, operating almost entirely on their own with minimal support and on very low wages. He now has much more confidence in the services which his patients receive after hospital and much more respect for partner agencies, using this to build a series of more effective interprofessional relationships which help him to navigate traditional service boundaries (personal communication). Clearly, individuals should not have to use their holiday to fix systemic problems, but there may be scope to build on these insights through more formal mechanisms such as joint training or shadowing schemes.

During the pandemic, radical changes were possible in timescales that would never usually be achievable. Many localities moved quickly to create a series of flexible, practical, joined-up services to meet people’s needs in an emergency, 7 12 often making considerable use of digital technology 21 and working closely with the voluntary and community sector. An important and life changing contribution was also made by families, volunteers, and local communities. 22 23 24 Indeed, a survey of at least eight European countries highlighted that the average number of weekly hours of care provided by family carers increased by nearly 20% during the pandemic, and over 10% of respondents started to provide care as a result of the pandemic. 25

While this was often born out of necessity and could be a source of considerable stress, it is an important reminder that the bulk of care has always been delivered by family and communities. Moreover, many social care services have historically been “deficit focused” (focusing on what is “wrong” with the person). In contrast, responses to covid-19 had to build on the community based supports we all draw on to live our lives, supplementing these networks and relationships with some formal support where needed. This might be described as being more community oriented and strengths based—and such approaches have much to offer more generally in terms of future social care reform. 26

Longer term government action is needed to build a stronger care and support infrastructure capable of overcoming the considerable workforce, funding, and service pressures being experienced in response to tightening fiscal budgets and population ageing and multimorbidity. 12 17 While this might look different in different countries, the House of Lords Adult Social Care Committee, 1 as one example, sets out a series of recommendations to achieve this, including a realistic, long term funding settlement; a properly resourced workforce strategy; and establishing a powerful national commissioner for care and support to strengthen the voice and identity of the sector. These calls are recent (December 2022) but the fact that they came from the heart of the UK establishment may give an indication of the real and current nature of these issues.

Above all, social care is perhaps its own worst enemy by tending to describe what it does in terms of a series of “services” that help people with particular “activities of daily living” ( box 1 ). Instead, it might be better to focus on the care and support on which we all draw to live our lives. For example, #SocialCareFuture is a UK coalition aiming to bring about long term change through a social movement rather than a specific health or social care policy. 19 Made up of people who draw on care and support, as well as families, professionals, managers, and politicians, the movement promotes a system of social care that helps people to lead their chosen lives. It argues: “We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us . . . When organised well, social care helps to weave the web of relationships and support in our local communities that we can draw on to live our lives in the way that we want to, with meaning, purpose and connection, whatever our age or stage of life.” 19

It is hard to see how anyone could disagree with the #SocialCareFuture vision. The difficulty, of course, is taking a set of services which were not designed with these aspirations in mind and making such a vision a reality. As Peter Beresford, a social work academic, has commented 27 : “Social care is not rocket science. It is much more complex and subtle than that.” While the longstanding invisibility of adult social care was so tragically exposed during the covid-19 pandemic, this has also created a moment when there may be scope to better understand and value the contribution it makes, raise its profile, and build on lessons to better design and deliver adult social care and support in future.

Key messages

Adult social care is often largely “invisible”—low profile, poorly understood, and therefore often neglected by the public, the media, and policy makers

This was particularly apparent during the pandemic, with tragic consequences

We need to raise awareness of the importance of social care (with policy makers and the broader public), better understand the breadth of the contribution it makes, and develop a more positive vision for adult social care more generally

Contributors and sources: JG is a non-executive director of an NHS trust and of a local authority children’s service. He was a special adviser to the House of Lords Adult Social Care Committee. CF is a member of the Coalition for Personalised Care, the Social Care Sector COVID-19 Stakeholder Group, and the NHS Assembly and a trustee of the Race Equality Foundation, and the Social Care Institute for Excellence. LH is a board member and past president of Eurocarers, an expert adviser to the National Board of Health and Welfare in Sweden regarding informal (family) carers, care, and carers support. MM is a professor of innovation and the governance of integrated care at Tilburg University/TIAS and a board member of the International Foundation of Integrated Care. This article is based on insights from leading academics, people who draw on care and support, organisations that support unpaid family carers, and organisations that seek to implement evidence in adult social care, from England, the Netherlands, and Sweden, countries with a range of health and social care systems. All authors provided informal advice to the social care system and to national policy makers during the covid-19 pandemic.

Public and patient involvement: CF has personal experience of drawing on care and support, and chairs the board of Think Local Act Personal (a national partnership of more than 50 English organisations committed to transforming health and social care through personalisation and community based support). LH has been an unpaid carer to relatives in the UK and Sweden.

Competing interests: We have read and understood BMJ policy on declaration of interests and have no interests to declare.

Provenance and peer review: Commissioned; externally peer reviewed.

This article is part of a collection proposed by the Health Foundation, which also provided funding for the collection, including open access fees. The BMJ commissioned, peer reviewed, edited, and made the decision to publish these articles. Rachael Hinton and Paul Simpson were the lead editors for The BMJ .

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

• ↵ House of Lords Adult Social Care Committee. A “gloriously ordinary life”: spotlight on adult social care. Report of session 2022-23. House of Lords, 2022. https://committees.parliament.uk/publications/31917/documents/193737/default/
• ↵ Carers Trust. Over 90% of adult unpaid carers feel ignored by the government. 2022. https://carers.org/news-and-media/news/post/169-over-90-of-adult-unpaid-carers-feel-ignored-by-the-government
• ↵ Health Foundation. Written evidence to parliamentary health committee, 17 May 2022. (ASC0020). https://committees.parliament.uk/writtenevidence/108644/html
• ↵ Comas-Herrera A, Marczak J, Byrd W, Lorenz-Dant K, Patel D, Pharoah D, eds. LTCcovid contributors. LTCcovid international living report on covid-19 and long-term care. London School of Economics and Political Science. https://ltccovid.org/international-living-report-covid-ltc/
• ↵ House of Commons Public Accounts Committee. Readying the NHS and social care for the covid-19 peak. 2020. https://committees.parliament.uk/publications/2179/documents/20139/default/
• Think Local Act Personal
• Shembavnekar N ,
• Comas-Herrera A ,
• Salcher-Konrad M ,
• Baumbusch J ,
• ↵ Booth R. Covid care home discharge policy was unlawful, says court. Guardian 2022 Apr 27. https://www.theguardian.com/world/2022/apr/27/covid-discharging-untested-patients-into-care-homes-was-unlawful-says-court
• Ludvigsson JF
• Wetenschappelijke Raad voor het Regeringsbeleid
• ↵ Public Health Agency of Sweden. Suggestions of measures for some of social services’ areas of work with the spread of infection with covid-19: reporting back from the government’s mission. Case no. 02934-2020 [in Swedish]. 2020. www.folkhalsomyndigheten.se/publicerat-material/
• ↵ Szebehely M. International experiences of covid-19 in nursing homes: background report for the government’s official investigation, SOU 2020:80 “Care of older people during the pandemic” [in Swedish]. Swedish Government, 2020.
• ↵ Royal Netherlands Academy of Arts and Sciences (KNAW). Met de kennis van straks. De wetenschap goed voorbereid op pandemieën. [With knowledge of the future. Science well prepared for pandemics]. 2022. https://storage.knaw.nl/2022-09/KNAW-Advies-Met-de-kennis-van-straks-De%20wetenschap-goed-voorbereid-op-pandemieen-260922.pdf
• ↵ National Institute for Public Health and the Environment. Ervaringen en behoeften van ouderen tijdens de corona-epidemie: verder kijken dan virusbestrijding [In Experiences and needs of seniors during the COVID-19 pandemic. Looking beyond virus control]. 2022. https://rivm.openrepository.com/handle/10029/626355
• Skills for Care
• Bennett M ,
• ↵ Social Care Future. A vision for the future of social care. https://socialcarefuture.org.uk/a-vision-for-the-future-of-social-care
• Carpenter J ,
• Dickinson H
• ↵ Swedish Agency for Health and Care Services Analysis. Under the circumstances: consequences of covid-19 for social services’ individual and family care services, Report 2021. 2021. https://www.vardanalys.se/rapporter/under-radande-omstandigheter/
• Bergmann M ,
• Tur-Sinai A ,
• Fabbietti P ,
• Fernandes-Jesus M ,
• Ntontis E ,
• Eurocarers/INRCA
• ↵ Social Care Institute for Excellence. Asset-based places: a model for development. July 2017. https://www.scie.org.uk/future-of-care/asset-based-places .
• ↵ Beresford P. What services users want. Guardian 2005 May 23. www.theguardian.com/society/2005/mar/23/thinktanks.longtermcare

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What is health and care research?

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You already conduct research in your day-to-day life. This research informs and broadens your understanding of things before you make a decision.  Health and care research is the same. It seeks to find answers to questions about the best options available.  It then uses these discoveries to make decisions about improvements or changes. This is so we can:

• diagnose diseases earlier or more accurately
• provide life-changing treatments
• prevent people from developing conditions
• improve health and care for generations to come
• ensure everyone has a better quality of life

Although health professionals already know a great deal, there are still so many questions that need answers. Sometimes, the outcome of research just confirms that what we have at the moment, is the best available to us right now. 

How research contributes to our NHS

This short film explains the important role that research plays in the NHS and how important it is for the future that we all consider taking part ( video transcript ).

Good research is: 

• Relevant – it answers questions that are important to the health and care of the public
• High quality – it has to follow strict legal standards 
• Safe   – it puts people’s safety and dignity first

The first clinical trial

The first clinical trial was conducted by James Lind.  He was a Scottish doctor and a pioneer of naval hygiene in the Royal Navy.  He conducted the first clinical trial in history in 1747.

James wanted to investigate whether citrus fruits cured scurvy. He selected twelve patients with scurvy on a ship, kept them together and gave them all different diets and monitored them. By the end of the week, the sailors whose daily diet included citrus fruits recovered, therefore proving that citrus fruit could cure scurvy.

We still celebrate this milestone each year on International Clinical Trials Day.  

Myths about research

Understanding the facts is really important when deciding whether to take part in research.  By clicking on the arrow next to each myth you can reveal the facts. 

All health and care research is high risk

All health and social care research has to go through very   strict ethical and regulatory checks   before it can go ahead. There are lots of   different ways to get involved with research . Some involve taking a new medicine or having a new form of treatment, others may be as simple as filling out a questionnaire or leaving a sample. People are very closely monitored while they are taking part in research, so although health and care research is not entirely risk-free, the chances of something going wrong are small.

My doctor will tell me about the research available

Not all health and care professionals will be fully informed about all of the research opportunities available to you. They might also not have the time to discuss it with you in your appointment.  However, it is important to ask about opportunities to get involved in research as your healthcare professional will know how to find out what might be available. You can search for studies on this website  by using the search bar at the very top of each page by typing in your town, postcode, body part, medicine or health condition.  You can also find a condition by pressing the “ view conditions ” button. 

Research can only take place in hospital

Health and care research can take place in many different places, from schools to care homes depending on the type of research. It is more common than ever before for research to take place in non-clinical settings. Digital technology provides a way of getting people involved from the comfort of their own homes.

Health and care research means taking lots of drugs

Not all health and care research involves taking drugs. The research may involve testing a new device to help monitor or administer a medicine for an illness. It could be about monitoring how certain changes in our diet and lifestyle could help the health of our nation in the future. Research might simply involve talking to someone, completing a short questionnaire or even using an app on a mobile device.   There are also many   different ways to be involved in research without being a participant in a research study .

People are treated like guinea pigs

Whatever the type of research, anyone who is involved should be treated with respect. The research is not being done to them but with them. People who participate in research often say that they feel well cared for as they have a dedicated contact within the research staff team. Research teams must follow   ethical guidance   and before the research can take place, they must seek approval for their plan from a Research Ethics Committee. Research that involves new medicines is not tested on people first. It will have gone through a process to ensure it is ready for use with people. 

Health and care research is only about finding a cure

Research aims to prevent diseases as well as cure them. There are a range of factors which can contribute to your health, for example: where you live, what you eat and whether you have a good support network of family and friends. Public health research seeks to answer questions about some of these factors.

Research seeks to find ways for people to live well with long-term conditions. It can help to find out the best ways to care for people living with life-limiting illness and pain, which is known as ’palliative care’. Research can lead to improvements in end-of-life care across all diseases and to help patients to live in comfort and die with dignity.

Health and social care research only involves physical diseases, it cannot help with mental health

People’s health is not limited to physical disease, it includes their mental well being. Research therefore seeks to answer questions about mental health such as is medicine, counselling or a combination of both the best treatment for individuals living with depression? Members of the public can   have a role in identifying and prioritising where health research is focused . Given increased awareness of the effects our mental health can have on our physical well being, this is likely to be a growing area of health and social care research. Read about all the research happening within the NIHR specialty for mental health .

Children are not allowed to participate in health and care research

Children can take part in health and care research with the permission of their legal guardian. The research team may meet with the child to make sure they understand what the research is about. They may use pictures to explain the study. Research in child health is vital to help find new and better ways to care for children. You can find studies for children by typing "Children" in the search box at the very top of this page.

Research only benefits the drug companies

Health research is funded by drug companies, charities and the government, although when the NHS undertakes research specifically for drug companies, the company pays the full cost.  Everyone benefits from the development of new medicines, and without commercial drug companies there would be less research taking place.

Different types of research

Healthcare research

Sometimes health research studies may be referred to as ‘clinical trials’.  They usually involve examining and observing people with different conditions and sometimes comparing them with people who don't have the condition. It can also involve research on samples of blood or other tissues, or tests such as scans or X-rays. Researchers can also analyse information in patient records, or the data from health and lifestyle surveys.

Public health research

Tackles some of the bigger health issues that affect society as a whole, for example, the impact of giving up smoking, how many steps a day for good health etc. It also looks at the benefits, costs, acceptability and the wider impact of treatments.

Social care research

Is about improving the lives of people who receive care and support from our social care sector. Research in social care could be about introducing new devices and technologies such as: lifting equipment to help with residents, exploring the impact of technology driven care environments or changing social care policies and practice. 

Important research discoveries

Launched in 1961,   the contraceptive pill was initially only prescribed to married women, but the law was relaxed in 1967. The pill works by suppressing fertility with either progesterone or oestrogen or, more commonly, a combination of both. 

Penicillin   was discovered in 1928 and developed into a drug in the early 1940s. Today it’s used to treat a broad range of bacterial infections accounting for around 45% of the antibiotics prescribed in the NHS in England.

Research in the 1980s and 1990s showed that low doses of blood-thinning drugs such as   aspirin and warfarin   significantly reduced the number of heart attacks and strokes in people at risk.

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Maximising the benefits of research: Guidance for integrated care systems

England has a vibrant research and development ecosystem, with well-developed research infrastructure and research expertise within our health and care workforce. The value of research in transforming health and care is significant; additionally, staff satisfaction, recruitment and retention is higher among staff who are involved in research. The inception of integrated care systems (ICSs) provides the opportunity for systems to embed research within health and care for the benefit of our population. Supporting this opportunity, a clear research thread runs through ICS strategies and plans, from joint strategic needs assessments and joint health and wellbeing strategies , integrated care strategies , joint forwards plans , integrated care board (ICB) annual reports and the assessment by NHS England of the discharge of duties by ICBs.

The Health and Care Act 2022 (the 2022 Act) sets new legal duties on ICBs around the facilitation and promotion of research in matters relevant to the health service, and the use in the health service of evidence obtained from research. NHS England will assess ICBs for their discharge of these duties. The ICS design framework sets the expectation that in arranging provision of health services, ICBs will facilitate their partners in the health and care system to work together, combining expertise and resources to foster and deploy research and innovations. This guidance supports ICBs in fulfilling their research duties.

ICSs are encouraged to develop a research strategy that aligns to or could be included in their integrated care strategy. This strategy will enable the unification of research across ICS partners, and be consistently embedded to:

• identify and address local research priorities and needs, and work collaboratively to address national research priorities
• improve the quality of health and care and outcomes for all through the evidence generated by research
• increase the quality, quantity and breadth of research undertaken locally
• extend and expand research in settings such as primary care, community care, mental health services, public health and social care
• drive the use of research evidence for quality improvement and evidence-based practice
• influence the national research agenda to better meet local priorities and needs
• improve co-ordination and standardisation within and between localities for the set up and delivery of research
• harness the patient and economic benefits of commercial contract research
• co-ordinate and develop the research workforce across all settings.

1. Introduction

This guidance sets out what good research practice looks like. It supports integrated care systems (ICSs) to maximise the value of their duties around research for the benefit of their population’s health and care and, through co-ordination across ICSs, for national and international impact. It supports integrated care boards (ICBs), integrated care partnerships (ICPs) and their partners to develop a research strategy that aligns to or can be incorporated into their integrated care strategy, and helps them and their workforce to build on existing research initiatives and activities across health and social care to improve sector-wide performance and best practice

• explains the ICB legal duties and other requirements around research and the use of evidence from research, and that research is included in forward planning and reporting
• encourages system leaders to develop a footprint-wide research strategy that aligns to local and national research priorities, develops and supports their workforce, takes the opportunities offered by commercial research and includes plans to embed research in their system’s governance and leadership
• identifies best practice examples and other resources that ICBs may find useful as they develop their research strategies.

This guidance provides comprehensive information for use by:

• those with senior responsibility, including at board level, for research strategy development and/or operationalising research
• managers responsible for developing joint strategic needs assessments, integrated care strategies, joint health and wellbeing strategies, joint forward plans, other linked strategies, or reporting on ICB activities
• research managers
• research and development/innovation leads
• heads of services
• knowledge and library specialists.

It may also be useful to individuals involved in research, education, and partner organisations such as local authorities, social care services, the voluntary, community and social enterprise sector (VCSE) and other providers of healthcare services.

NHS England provides guidance on embedding research in the NHS and secure data environments, and the Office for Life Sciences (OLS ) champions research, innovation and the use of technology to transform health and care service. Other sources of guidance, support and information are signposted in this guidance to support ICSs in aligning to national visions, strategies and plans around research.

1.1 Definition of research

NHS England uses the UK Policy Framework for Health and Social Care Research definition of research:

“… the attempt to derive generalisable or transferable new knowledge to answer or refine relevant questions with scientifically sound methods. This excludes audits of practice and service evaluation. It includes activities that are carried out in preparation for or as a consequence of the interventional part of the research, such as screening potential participants for eligibility, obtaining participants’ consent and publishing results. It also includes non-interventional health and social care research (that is, projects that do not involve any change in standard treatment, care, or other services), projects that aim to generate hypotheses, methodological research and descriptive research”.

This broad definition encompasses the range of types of research:

• clinical trials and other clinical investigations into the safety and effectiveness of medicines, devices and health technologies
• public health research
• observational studies
• discovery science and experimental medicine
• translational research in which results from basic research are developed into results that directly benefit people
• applied research
• research to support policy-making and commissioning
• social care research and research in social care settings
• research into NHS services and care pathways.

1.2 Why research is important

The UK is a world leader for research and invention in healthcare, with around 25% of the world’s top 100 prescription medicines being discovered and developed in the UK ( The impact of collaboration: The value of UK medical research to EU science and health ). Research in the health and care system is important because it underpins all advances in health and care and is the basis for evidence-based practice. Engaging clinicians and healthcare organisations in research is associated with improvements in delivery of healthcare ( Does the engagement of clinicians and organisations in research improve healthcare performance: a three-stage review) . To benefit service users and the public, the NHS and local government, and achieve return on investment, it is vital that research is disseminated, shared and translated into practice.

The National Institute for Health and Care Research (NIHR) is funded by the Department of Health and Social Care (DHSC) to transform research in the health and social care system, including through support for NHS research. Research led to the first proven treatments for Covid, for example the use of dexamethasone, estimated to have saved over a million lives worldwide . This success was in part due to how research is undertaken in the unique environment of the NHS, innovative trial designs, the support provided by the NIHR, frontline staff enabling research, and the awareness and readiness of the public to support research. We need to learn from these and other successes, and translate this across all health and care settings. ICSs will play a vital role in enabling research to be embedded in evolving patient pathways across their footprints.

Example: PRINCIPLE trial – finding treatments for Covid recovery at home

The Platform Randomised Trial of Treatment in the Community for Epidemic and Pandemic Illnesses (PRINCIPLE) was a UK-wide, clinical study to find Covid treatments for recovery at home without the need to attend hospital. The study was open to all with ongoing Covid symptoms, registration was easy, and the trial was run entirely remotely by delivering ‘participant packs’ to people’s homes. It was one of the first trials in the world to show that azithromycin and doxycycline did not benefit patients with Covid and to identify the effectiveness of a commonly used drug – inhaled budesonide –in reducing time to recovery.

The PRINCIPLE study team demonstrated the integral role that primary, secondary and ambulatory care staff can play in the delivery of studies. Local collaborators were trained in good clinical practice to allow them to assess and confirm the eligibility of potential participants, and were commended specifically for their use of patient data to contact people soon after they received a positive test result. It is this network of local staff contributing to research within their healthcare setting that has enabled over 10,000 people to be recruited onto this study so far – one of the largest at home Covid treatment studies worldwide.

This is an example of a study design that incorporates the vital contributions of healthcare providers across the system.

Policy-makers and commissioners need evidence to support their decision-making around the delivery and system-wide transformation of health and care services, including how health inequalities will be reduced.

There is also evidence that:

• staff involved in research have greater job satisfaction and staff turnover is lower in research active trusts ( Academic factors in medical recruitment: evidence to support improvements in medical recruitment and retention by improving the academic content in medical posts)
• research active hospitals have lower mortality rates, and not just among research participants ( Research activity and the association with mortality )
• 83% of people believe that health research is very important ( Survey of the general public: attitudes towards health research)
• healthcare performance improvements have been seen from the creation of academic research placements ( Experiences of hospital allied health professionals in collaborative student research projects: a qualitative study )
• clinical academic research, and in particular the practice changes resulting from it, is associated with improved patient and carer experiences ( A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine ).

Key to having research embedded in health and care is having staff who can understand, undertake, use and generate new research, and share actionable research finding as part of a pro-research culture. Education and training are therefore critical for research to be sustainably embedded within health and care, and for people to develop careers in research and support it in their clinical or care roles.

DHSC, NHS England, the devolved administrations, NIHR and other partners expect to publish a clinical research workforce strategy in 2023/24 to help the UK realise the national clinical research vision outlined in Saving and Improving Lives: The Future of UK Clinical Research Delivery and deliver the Life Sciences Vision to see research embedded in the NHS as part of health and care pathways.

Research will support ICSs to deliver on their four key aims:

Improving outcomes

The NHS 2023/34 priorities and operational planning guidance emphasises the importance of research in improving patient care, outcomes and experience.

Research evidence will inform commissioning decisions to improve experience and outcomes. Research activities should align with the local health priorities identified through local joint strategic needs assessments, and may be best designed and delivered by collaborating with partners. Research priorities may be best addressed by collaborating with partners nationally to design and deliver research.

Tackling inequalities

Research can give a better understanding of local populations and the wider determinants of health, and with this the steps to maintain health and narrow health inequalities.

Enhancing productivity

The development of ICSs creates the opportunity to consider research delivery within the ICS and across ICS boundaries, increasing flexibility of workforce or recruitment while reducing bureaucracy and improving research productivity and value for money.

Supporting social and economic development

An active research ecosystem working in a co-ordinated way and to national standards brings revenue and jobs to regions. The NIHR Clinical Research Network (CRN) supports service users, the public and health and care organisations across England to participate in high-quality research. The 2019 impact and value report detailed the significant income and cost savings that commercial research generates for NHS trusts. Between 2016/17 and 2018/19 the NHS received on average £9,000 per patient recruited to a commercial clinical trial and saved over £5,800 in drug costs for each of these patients. This equates to income of £355 million and cost savings of £26.8 million in 2018/19.

In 2021 150 members of the Association of Medical Research Charities funded £1.55 billion of medical research, including the salaries of 20,000 researchers. Every £1 million spent by charities on medical research in the UK contributes £1.83 million to the economy.

Example: Research that cut problematic prescribing and generated cost savings in general practice – a local health priority

Analysis of routine patient data identified the need for strategies targeting clinicians and patients to curb rising opioid prescribing. From this, the Campaign to Reduce Opioid Prescription (CROP) was launched in 2016, urging GPs across West Yorkshire to ‘think-twice’ before prescribing opioids. This promoted the NICE guidance on chronic pain , which recommends reducing the use of opioids because there is little or no evidence that they make any difference to people’s quality of life, pain or psychological distress, but they can cause harm, including possible addiction.

Over a year 15,000 fewer people were prescribed opioids (a 5.63% relative reduction), a net saving to the NHS of £700,000. The biggest reduction was in people aged over 75, who are at higher risk of opioid-related falls and death, and there was no compensatory rise in the prescribing of other painkillers or referrals to musculoskeletal services.

The CROP campaign, led by researchers at the University of Leeds, has subsequently been rolled out across all ICBs in Yorkshire and the Humber, and the North East and North Cumbria ICB, and the 1,045 practices to which it has been delivered are reporting results similar to the above.

Foy R, Leaman B, McCrorie C, Petty D, House A, Bennett M, et al (2016) Prescribed opioids in primary care: cross-sectional and longitudinal analyses of influence of patient and practice characteristics | BMJ Open 69(5).

Alderson SL, Faragher TM, Willis TA, Carder P, Johnson S, Foy R (2021) The effects of an evidence- and theory-informed feedback intervention on opioid prescribing for non-cancer pain in primary care: A controlled interrupted time series analysis. PLOS Med .

2. ICS, ICP and ICB responsibilities and requirements

ICBs have legal duties and other requirements that relate to research. These are additional to the duties and responsibilities of individual providers within ICS footprints. This section sets out what these duties mean in practical terms and gives examples of how to meet them.

2.1 Legal duties relating to research in the Health and Care Act 2022

Part 1 of the 2022 Act includes specific legal duties for ICBs and NHS England in respect of research. In the Explanatory Notes to the 2022 Act, government sets out how ICBs could discharge their research duty.

Duty to facilitate or otherwise promote research

The ICB duty builds on the previous clinical commissioning group (CCG) duty to promote research, by requiring each ICB, in the exercise of its functions, to facilitate or otherwise promote research on matters relevant to the health service. This duty is intended to include a range of activities to enable research. Section 3 of this guidance outlines ways in which ICBs can do this.

The NHS Constitution also makes clear that patients should be enabled to take part in research: “the NHS pledges … to inform you of research studies in which you may be eligible to participate”.

The Provider Selection Regime (PSR) will be a new set of rules for arranging healthcare services in England, introduced by regulations made under the 2022 Act. The research component should be referred to once the PSR is published.

Duty to facilitate or otherwise promote the use in the health service of evidence obtained from research

This duty similarly builds on the CCG requirement to promote the use of evidence. ICBs must, in the exercise of their functions, facilitate or otherwise promote the use in the health service of evidence obtained from research. For example, ICBs should facilitate or otherwise promote the use of evidence in care, clinical and commissioning decisions.

Duty for ICSs to include research in their joint forward plans and annual reports

Joint forward plans are five-year plans developed by ICBs and their partner NHS trusts and foundation trusts. Systems are encouraged to use the joint forward plan as a shared delivery plan for the integrated care strategy and joint health and wellbeing strategy, aligned to the NHS’s universal commitments. The plan must explain how the ICB will discharge its duties around research, and the ICB must report on the discharge of its research duties in its annual report. These inclusions will raise the profile of research at board level and help embed research as a business-as-usual activity.

The joint forward plan and NHS Oversight Framework guidance set the minimum requirements for what needs to be included in plans and reports.

NHS England duty to include how each ICB is carrying out its duties relating to research in its annual performance assessment of each ICB

NHS England has a new legal duty to annually assess the performance of each ICB and publish a summary of its findings. For 2022/23 NHS England will complete a narrative assessment, identifying areas of good and/or outstanding performance, areas for improvement and any areas that are particularly challenged, drawing on national expertise as required and having regard to relevant guidance. This assessment will include a section considering how effectively the ICB has discharged its duties to facilitate or otherwise promote research and the use of evidence obtained from research.

This, alongside the implementation of the NHS Long Term Plan commitment to develop research metrics for NHS providers, will increase transparency across the system and enable more targeted support for research. Research metrics from NHS England, the Care Quality Commission (CQC) and NIHR will enable the monitoring of progress over time, and are under development with sector colleagues, including providers.

2.2 Legal requirement to work with people and communities

Working with people and communities is a requirement of ICBs, and statutory guidance is available to support them and their partner providers meet this legal duty. A co-ordinated approach across healthcare delivery and research will make it more likely that research reflects what matters to people and communities.

This will also help ICBs to fulfil their legal duty in the 2022 Act to reduce health inequalities in access to health services and the outcomes achieved. Section 3.9 includes links to resources to help guide engagement with underserved communities around research.

The Public Sector Equality Duty also applies and requires equality of opportunities between persons who share a relevant protected characteristic and persons who do not.

2.3 Research governance

While research can address local priorities, it typically operates across ICS boundaries and at national and international levels. Health and social care research is governed by a range of laws, policies, and international, national and professional standards.

The Health Research Authority (HRA ) is responsible for ensuring such regulation is co-ordinated and standardised across the UK to make it easier to do research that people can trust. The HRA is an executive non-departmental public body created by the Care Act 2014 to protect and promote the interests of patients and the public in health and social care research, including by co-ordinating and standardising the practice of research regulation. Local authorities and the NHS are obliged to have regard to its guidance on the management and conduct of research.

Before a research project can start in the NHS in England it must receive approval from the HRA. This includes research taking place in NHS trusts, NHS foundation trusts, ICBs or primary care providers of NHS commissioned services in England, and all research under an NHS duty of care, including that undertaken by NHS staff working in social care or other non-NHS environments.

The HRA schemes indemnify NHS organisations accepting these assurances against any claim covered by the NHS Litigation Authority arising as a result of incorrect assurances. If an NHS organisation duplicates the HRA assessments, it will be liable for any consequences of the decisions it bases on its own checks.

ICBs and partner organisations should have processes for the set up and delivery of research that comply with national laws and systems, and does not duplicate them. Such national systems include confirmation of capacity, National Contract Value Review (NCVR), management of Excess Treatment Costs (ETCs) and contracting arrangements (see section 2.4).

The UK Policy Framework for Health and Social Care sets out the roles and responsibilities of individuals and organisations involved in research.

2.4 Contractual requirements around research

NHS England mandates commissioner use of the NHS Standard Contract for all contracts for healthcare services other than primary care. The contract is updated annually. References to research in the current NHS Standard Contract and service conditions fall into three main areas.

Recruitment of service users and staff into approved research studies

The NHS Standard Contract obliges every provider of NHS-funded services to assist the recruitment of suitable subjects (whether patients or staff) into approved research studies. This requirement aligns to those in the 2022 Act that require ICBs to facilitate or otherwise promote research (see section 2.1). Section 3 considers how this requirement can best be met. Research involving people or their data requires ethical and potentially other approvals (see section 2.3).

National Directive on Commercial Contract Research Studies

Adherence to the National Directive is mandated as part of the NHS Standard Contract. The directive states that providers must:

• Use the unmodified model agreements for sponsor-to-site contracting; HRA and Health and Care Research Wales (HCRW) approval of studies will be dependent on use of these templates.
• Use the standard costing methodology to set prices for commercial contract research undertaken by NHS providers; this is currently in the NIHR interactive costing tool (NIHR iCT).
• Introduce the National Contract Value Review (NCVR) process in line with national rollout. NCVR is a standardised national approach to costing commercial contract research within the NHS. It currently covers acute, specialist and mental health trusts, but the intention is to roll it out to all NHS providers. The creation of ICSs is the ideal opportunity to explore how commercial study set up can be supported across these footprints, reducing the resource needed and time taken.

Comply with HRA/NIHR research reporting guidance

The provider must comply with HRA/NIHR research reporting guidance, as applicable.

2.5 Excess treatment costs

Patients in a research study may receive healthcare that differs from what is standard in the NHS, requires more clinician time or is delivered in a different location. The associated NHS treatment costs may exceed or be less than those of standard treatment. If greater, the difference is referred to as the NHS Excess Treatment Costs (ETCs).

In the case of commercial contract research, the commercial funder will pay the full cost of the study. In the case of non-commercial research, the commissioner of the service in which the study operates is responsible for funding the ETCs.

ICBs as commissioners of services are responsible for ETCs in services that they commission. Guidance for the management of ETCs is available.

DHSC and NIHR are piloting interim arrangements to support non-NHS ETCs for research in public health and social care (non-NHS intervention costs). Please refer to the further detail on the NIHR website .

2.6 Care Quality Commission

The CQC is currently developing its approach for ICS-level assessments, and its new assessment framework will be introduced towards the end of 2023 .

CQC inspection of NHS providers continue, with research assessed as part of the review of the trust-level Well-led framework. Providers are asked:

• Are divisional staff aware of research undertaken in and through the trust, how it contributes to improvement and the service level needed across departments to support it?
• How do senior leaders support internal investigators initiating and managing clinical studies?
• Does the vision and strategy incorporate plans for supporting clinical research activity as a key contributor to best patient care?
• Does the trust have clear internal reporting systems for its research range, volume, activity, safety and performance?
• How are service users and carers given the opportunity to participate in or become actively involved in clinical research studies in the trust?

3. Developing a research strategy

3.1 why develop a research strategy.

Like the health and care system, the research environment is complex. Developing a research strategy will help bring together the legal and other duties around research in a coherent way, and help the ICS understand its local research capability, workforce, activity and needs, set ambitions around research and maximise the benefits associated with commercial research. It will help demonstrate the benefit of research locally, nationally and internationally, and guide the production of clear plans.

Example: Value of research partnerships and integration with ICSs

Bristol Health Partners (BHP) Academic Health Science Centre (AHSC) has a fully integrated relationship as the new Research and Innovation Steering Group for the Bristol, North Somerset and South Gloucestershire (BNSSG) ICS, and reports directly to ICB chief executives.

The group provides the strategic direction and oversight for all research undertaken and delivered across the system. Membership includes directors of research, clinical strategy, public health, social care, senior innovation and education leaders from its core funding partners. It also includes public contributors and senior representatives from primary care, NIHR Applied Research Collaboration West, NIHR CRN West of England, West of England Academic Health Science Network (WEAHSN), Healthier Together ICS, university research institutes and People in Health West of England.

The group has reviewed ICS programmes, identified current and potential research and innovation connections, and begun to establish new connections. It has also supported work with the ICS Ageing Well programme and secured funding for innovative pilots to improve dementia care and increase physical activity for older adults.

Since 2016 BHP has directly contributed an estimated additional £1.1 million to support ICS priorities through Health Integration Team projects and other activities, and has attracted more than £33 million of external research, service redesign and infrastructure into the region.

3.2 General considerations

In developing its research strategy, the ICS may find it helpful to consider these overarching questions alongside the suggested focused content covered in the sections below:

• What do you hope to achieve within a given timeframe?
• Are all the right organisations involved in developing the research strategy?
• How will the health and care workforce be enabled to deliver the research strategy?
• How can research be embedded in existing health and care delivery and pathways?
• What mechanisms are in place to translate actionable research findings into practice and decision-making?
• What inequalities exist in different areas, communities or groups? How will you ensure planning and delivery of research aligns to CORE20plus5 priorities?
• Are you considering equality, diversity and inclusivity and the Public Sector Equality Duty in facilitating and promoting research opportunities for service users and for health and care staff?
• Is the ICS considering the opportunities of developing their commercial research portfolio?
• Is research informing or being informed by population health management?
• How will you plan and deliver research in a sustainable manner, aligning it to the Greener NHS agenda and the ICB’s duties in relation to climate change ?

Buy-in from NHS staff, patients and the public will be vital if ICBs are to discharge their research duties and deliver on their research plans. An important consideration is how to develop sustainable, routine and accessible information flows to ensure the ICB, partners, staff, patients and public can access up-to-date and appropriate information around local research activity, regional, national and international research opportunities and findings, and contact information.

3.3 Leadership and governance across the ICS

Executive leadership.

The Explanatory Notes to the 2022 Act suggest that ICBs have board-level discussions on research activity, the use of the evidence from research, the research workforce and research culture within the ICS. ICSs should refer to the NHS Leadership Competency Framework for board-level leaders at organisation and ICS level for the competencies relating to the research duties of ICSs, once published.

All ICBs are encouraged to have an executive lead responsible for fulfilling the research duties conferred by the 2022 Act. They should help give the ICB a clear understanding of research across the area, regularly reporting on progress towards agreed aims. An executive lead can take responsibility for ensuring clear research ambitions and a research strategy are developed; oversight of organisational research portfolios, diversity in research, alignment to national priorities; promotion of research skills and the need for research skills training; and succession planning.

Senior leaders could engage, consult and be supported by representatives of each registered health and social care professional group when developing strategic plans, and for oversight of training, succession planning, and equality and inclusivity. They could use the capacity and capability of the research and development leads within provider organisations, although established lead roles across social care settings are rare so extra effort may be needed to garner social care research insight.

Research steering group, board or forum

Some CCGs had research steering groups and some of these have expanded with the widening remit of ICBs. ICSs that do not have a such a group should consider adopting a model similar to one in other ICSs where research is effectively embedded in ICS governance structures.

A dedicated steering research group, board and/or forum can:

• provide dedicated time to plan, oversee and report on research
• bring a range of representatives from research infrastructure organisations, patients and the public together with representation from across the ICS, to develop a common aim and objective
• ensure board-level sight of research
• take a cross-ICS approach to research, increasing participation and diversity in research, and reducing bureaucracy.

Example: A dedicated research and innovation subgroup

East and North Hertfordshire Health Care Partnership established a formal research and innovation subgroup to support its objectives to transform services, reduce health inequalities and improve patient health and wellbeing. This subgroup is dedicated to determining and supporting local research priorities and developing an innovation agenda. With effective patient and public involvement, it is working to ensure the local population has access to more research opportunities.

Bringing together the NIHR, academia, industry and local health and care services, the subgroup develops collaborative work plans that support the design, implementation and evaluation of local transformation needs, sharing resources, staff, expertise and facilities. Its work exemplifies a sustainable approach to partnership working and supports Hertfordshire and West Essex ICS’s developing strategy.

HWE ICS Partnership Board 14 September 2021

3.4 Understanding your research activity and working with local and national research infrastructure

Research in NHS and non-NHS settings across an ICS footprint will be supported by different organisations. In some areas networks or collaboratives already exist to bring these organisations together, but in others the links are not as well formed. ICBs would benefit from having a clear map of the research infrastructure and pre-existing local or national investment into research in their area.

It may be valuable to consider:

• Who are the research leaders in your local health and care system, NIHR, higher education institutions, VCSE sector and businesses?
• Are there any pre-existing local or regional research, researcher or research engagement networks?
• What are the opportunities to inform, participate in, collaborate with or lead national and international research efforts in addition to local opportunities?

A list of organisations involved in research including NIHR-funded infrastructure and programmes is included in Annex 1 .

Much of the research undertaken in NHS and other health and care settings is funded though national calls and grants provided by funders such as NIHR, research charities , UK Research and Innovation (UKRI) , including the Medical Research Council (MRC ) and Economic and Social Research Council (ESRC) , and is aligned to national priorities. Other research may include national or international commercial or non-commercial clinical trials funders.

Partners within ICS systems can use NIHR research portfolio data to monitor and plan research activity; however, not all research is included within the NIHR’s portfolio, so this will not give a full picture of the research within the footprint. Mechanisms to map and monitor research more widely could be incorporated in ICB research strategies.

Some local needs may best be addressed through public health or social care research rather than research in primary, secondary or tertiary healthcare settings. Public health and social care research are described in Annex 2 .

Example: Mapping health and care research activity, expertise, interests and infrastructure

The Nottingham and Nottinghamshire Integrated Care System Research Partners Group meets bi-monthly and is chaired by the ICB Head of Research and Evidence. It brings together senior managers from the NHS providers, ICB, two local authorities, two universities and the NIHR CRN East Midlands, providing a forum for ICS-wide research discussions and the development of a system-wide collaborative approach to health and care research across the ICS. Among its aims, the group seeks to increase participation in research at both the organisational and population level, enable equity of access to research opportunities and generate impact on health and care pathways.

The group have mapped health and care research activity, expertise, interests and infrastructure in the constituent organisations. With this the ICS can see the research capabilities, strengths, expertise, and areas of synergy and opportunities for future collaboration that align to its needs and priorities, and also gaps for future development, recognising that organisations are at different stages of research development.

3.5 Understanding local needs

Universal NHS priorities will be reflected in local research needs, and each ICS footprint is likely to have its own specific local research needs. Joint strategic needs assessments (JSNAs) are undertaken jointly by local authorities and ICBs through health and wellbeing boards (HWBs) to identify current health and social care needs of local communities, where more information is needed to do so or to understand how best to address the need. People and communities should be directly involved in identifying local need, including by working with local charities, specific communities or groups who face inequalities in access to, experience of or outcomes from healthcare, eg to target health research at those areas and populations with greatest need.

ICPs are required to develop an integrated care strategy informed by JSNAs and the joint health and wellbeing strategy (JHWS). The integrated care strategy sets out how the assessed needs can be met through the exercise of the functions of the ICB, partner local authorities or NHS England, and is informed by research and practice-based evidence, as stated in the health and wellbeing guidance. In considering where such evidence is lacking, HWBs should identify in JSNAs those research needs that ICBs, local authorities and NHS England could meet through the exercise of their research functions.

Systems are encouraged to use their joint forward plan to develop a shared delivery plan for the Integrated Care Strategy and the JHWS that is supported by the whole system, including local authorities and VCSE partners. ICBs and trusts must also use their Joint Forward Plan to describe how the ICB will discharge its duty in respect of research.

The Explanatory Notes to the 2022 Act suggest how ICBs can discharge their duties around research. These include the articulating local research needs when assessing local needs and how they will be addressed when preparing strategies and plans, and encouraging partner organisations to play an active and collaborative role in pursuing these.

3.6 Supporting delivery of research

Once an ICS has a clear picture of its local research infrastructure it can consider how best to target and support research and the research workforce across its footprint and how research findings will be used. For this, the ICB should ensure that its approaches reflect national approaches to costing, contracting, approvals and information governance, and that they are also informed by learning from effective practices across equivalent ICBs.

As healthcare shifts into communities, ICSs should support the parallel shift in research by embedding research in health and care. Increasing access to research opportunities will give service users earlier access to new treatments, and faster research set up and delivery may provide the evidence needed to support improvements to local care sooner. Inclusive recruitment practices will be needed to ensure that all groups in society have the opportunity to help shape and take part in research, and benefit from research findings.

In developing its research strategy, an ICS has opportunities to reduce bureaucracy, and make research more efficient and effective across its own and with other ICS footprints, and across NHS and non-NHS boundaries, while meeting national regulatory guidance. ICBs will be expected to work with the HRA to co-develop, build on and implement strategies for further co-ordination and standardisation of study set-up and delivery processes. Any regional systems and processes that ICBs do establish must support consistent national practice in relation to the management and regulation of research, and should not duplicate them. The HRA will work with ICBs to address barriers to efficient and rapid study set-up, including model agreements, information governance and R&D office functions.

Other potential areas for streamlining and cross-organisational working include:

• cross-ICS research proposals to identify research needs
• research delivery – identifying how ICS-wide approaches could accelerate patient recruitment and deployment of research delivery staff
• shared data architecture, including the NHS Secure Data Environment for Research Network and its subnational secure data environments (SDEs). Subnational SDEs cover multiple ICSs to achieve access to multimodal data at a scale of approximately 5 million citizens, and over time will achieve technical and governance interoperability
• a greater focus on translation and implementation of research findings into health and care practice, supporting faster improvements
• sharing access to and funding for knowledge and library services
• shared processes and repositories for research assets.

The Explanatory Notes to the 2022 Act suggest that one way an ICB could discharge its research duty would be to have a dedicated research office or team supporting research.

3.7 Enabling cross-provider research

Health and care priorities can often only be addressed with complex, multiorganisational approaches and as such the research to inform these needs to span organisational boundaries. Organisational policies should promote cross-organisational research and dissemination of research findings, including through participation in collaborative research to address national priorities, joint staff posts, honorary contracts, and administratively easier movement of researchers between health and care organisations and other sector partners, including higher education, industry, charities and local authorities.

The HRA and ICS partners are developing national guidance to support cross-provider research.

The NIHR CRN can offer ICSs opportunities to participate in national and international research studies, including those the NIHR, industry and others commission.

3.8 Commercial research

Commercial contract research is research funded solely by industry, where NHS providers are contracted to carry out the research. Most of these research studies in the NHS are interventional clinical trials, such as the NHS-Galleri trial and Astra Zeneca’s COVID-19 vaccine development . Commercial research can give patients access to a wider range of research opportunities, earlier access to novel therapies and treatments, provide drugs free of charge to patients in trials, accelerate the development of new treatments and devices, generate income for providers, and fund NHS staff. It is vitally important for the benefit of patients, the NHS and the UK economy that we create an environment in the NHS that makes it easy and efficient for the NHS to undertake commercial research. This is particularly important when it comes to international commercial research, where companies can place their studies in a number of different countries and consideration of anticipated set up and recruitment times informs where they place trials.

Data gathered during some commercial research is specific to the study and is the property of the company, as is any Intellectual Property (IP) generated. In other cases, where the NHS contributes to the foreground IP – such as through the use of NHS data for research or where NHS expertise provides important contributions to a commercial product – it is important that the NHS shares in the value of IP generated as a consequence of its contributions.

The establishment of ICSs is an ideal opportunity for their creation of ambitions to enable, grow and benefit from commercial research. ICSs should explore how efficient commercial study set up and delivery could be streamlined across sites within their footprint, and should set ambitions around commercial research.

3.9 Involving patients, service users, carers and the public in research

In developing a research strategy ICSs should set out their approach to diverse public and patient involvement (PPI) in relation to research.

Areas where working with people and communities could add value in the context of research include:

• identification of local research needs, including through JSNAs and JHWSs
• designing research proposals in partnership with local or national experts
• raising awareness of research opportunities and recruitment of participants
• developing research outcome reports and identification of how and when participants will be able to access these
• consideration of how members of the public can access the outputs from publicly-funded research
• how volunteers should be involved and what they should be paid.

The UK Standards for Public Involvement sets out the core components of good public involvement. A guide outlining good practice in engaging underserved communities around research is available from NHS England. Resources about good practice around PPI in designing and delivering research, including around incentivisation , are also available from the HRA and NIHR .

It will be useful to link into established community involvement approaches. NIHR infrastructure organisations may have established networks of expert PPI representatives, and ICSs have extensive VCSE Alliances. A co-ordinated community engagement approach across health and care delivery and research will reduce the risk of overburdening communities with organisations wanting to work with them, and will support the identification of under-served communities.

3.10 Ensuring anyone can participate in research

Making research more visible within communities and increasing the public’s understanding of research can ensure greater diversity in research participation. Research findings will then be more generalisable to a broader range of groups or communities, or can be targeted and specific to relevant communities.

ICSs should seek mechanisms to ensure that opportunities to take part in research are available to all. They should consider encouraging patients and members of the public to register on NIHR Be Part of Research (a national registry where people can express their interest in being contacted about research that is relevant to them), widely disseminate research opportunities and make provision for inclusive access for communities to take part in research. Decentralised or virtual trials are remote access trials recruited to and delivered using electronic tools, making it easier for people to participate in some studies without needing to visit a recruiting hospital or attend appointments in person. ICBs should consider ways in which research delivery can increase access to research opportunities for people within their area. ICBs should also advise the public how they can access research outputs.

NIHR and UK Research and Innovation provide resources that help organisations address issues of equality, diversity and inclusion in research settings.

Example: RELIEVE-IBS decentralised trial

In 2020, Newcastle researchers launched RELIEVE-IBS, one of the first interventional decentralised clinical studies in the UK to trial Enterosgel, a new treatment for irritable bowel syndrome with diarrhoea (IBS-D). Decentralised trials are remote access trials that use electronic tools for trial recruitment and delivery, without the patient needing to visit a recruiting hospital site, which could be miles from their homes – a convenient option for patients with IBS-D. By running the trial remotely, researchers could reach beyond the small proportion of those with this condition who attend specialist clinics, as well as save resource for the sponsor.

Not only did this trial embrace technological developments to deliver research, but it empowered more patients to become involved regardless of where they lived. With in-depth patient input, the research team were able to shape the recruitment approach to be highly accessible to participants and were offered feedback on how to refine the trial design by the sponsors. The resulting patient-centric design ensured a good recruitment response when the trial opened.

NIHR (2020) Virtual trial recruits 67% faster led by NIHR Patient Recruitment Centre in Newcastle in collaboration with Enteromed

NIHR (2021) Pushing virtual boundaries to improve patient engagement and accessibility

NIHR (2022) RELIEVE IBS-D trial case study

3.11 Health data in research

Health data generated through care of service users in the NHS can fuel a revolution in the research and development of new diagnostics and treatments, maximising the potential to improve service user outcomes and experiences, support diversity in research, and minimise health inequalities through research. To do this, researchers need access to high quality and timely data to generate insights. The public expect data to be used legally and efficiently to conduct and support research.

National commitments around data for research can be found in Data saves lives: reshaping health and social care with data . This strategy shows how data will be used to bring benefits to all parts of health and social care. To achieve this vision, the NHS will be making a strategic move away from a system of data dissemination to one of data access when making NHS health and social care data available for research and analysis. This will be facilitated by the implementation of secure data environments (SDEs).

SDEs are data storage and access platforms with features that enable organisations to have greater control and oversight over their data. SDEs allow approved users to view and analyse data without it having to leave the environment. The SDE policy guidelines provide a clear signal to the sector that SDEs will become the default way of accessing NHS data for research.

This change is supported by major investments in digital infrastructure through the Data for Research & Development Programme, which is funding the development of national and subnational SDEs. The subnational SDEs will cover the entirety of England and individual platforms will cover several ICS.

ICBs should seek ways to promote and enable the use of these rich data sources for research and include them in their research strategy.

3.12 Using evidence for planning, commissioning and improving health and care

Evidence-based commissioning has advantages for the commissioner, workforce and service users, as it can:

• lead to innovation in service design and delivery
• enhance the quality of health and care provision
• reduce clinical variation between locations and providers
• improve equity of access to services
• improve patient and population outcomes.

As part of the commissioning process, commissioners are expected to use evidence-based clinical policies, as per the Roadmap for integrating specialised services within integrated care systems . Knowledge and library services can help source and interpret evidence.

The Provider Selection Regime will reflect the research duties of the 2022 Act and should be referred to when commissioning provider services, once it has been published.

NHS knowledge and library services provide access to evidence and support for knowledge management; they train people in searching for, handling and publishing information. The Knowledge for Healthcare strategy encourages and equips NHS knowledge and library services to support NHS organisations with the translation of knowledge for the spread and adoption of research and innovation. To fulfil their obligations under the 2022 Act, ICBs could commit to active knowledge translation.

Evidence for commissioning information is available from a number of sources:

• NHS Library and Knowledge Hub
• Health Libraries and Information Services Directory
• NICE guidance
• NIHR evidence
• NHS evidence works toolkit
• Academy of Medical Royal Colleges: Evidence-based Intervention
• A million decisions

The infographic for the role of research and evidence in commissioning also provides sources for evidence-based commissioning.

Example: Evidence mobilisation, knowledge sharing and improving outcomes

The STEMClub (Sustaining Transformation by Evidence Mobilisation) is a network in the North East and North Cumbria that brings together local policy and decision-makers with NHS knowledge and library specialists to facilitate evidence-based decision-making. The input of knowledge specialists ensures timely access to published research and provides knowledge management expertise to shape how soft intelligence is translated into knowledge assets.

As members within the STEMClub network, knowledge and library specialists are providing ongoing detailed evidence reviews and information management expertise to facilitate system-wide working , eg:

• North East North Cumbria Frailty Framework
• North East and North Cumbria Maternity Clinical Network
• a review of optimal patient transfer times in the North East and North Cumbria
• regular evidence summaries for the ICS Mental Health Evidence and Evaluation subgroup.

3.13 The health and care workforce and research

Staff involved in research have greater job satisfaction and research active trusts have lower staff turnover [3] . Clinical academic roles [7] , having research colleagues within services [8] and taking students on research placements [6] are felt to foster an increase in knowledge and skills across the wider staff workforce. The General Medical Council (GMC) and the Royal College of Physicians (RCP) and NIHR have issued position statements and recommendations around research, with additional signatories including UKRI, UKRD, the Academy of Medical Royal Colleges and the Royal College of Surgeons of England. Learning resources, including programmes for ongoing professional development of the research delivery workforce, are available through NIHR Learn.

In developing a research strategy ICSs could ensure that, as part of their people function and approach to workforce planning :

• Staff roles in leading, delivering or facilitating research and in supervising those developing research skills are recognised, supported and enabled across all staff groups and health and care settings as part of a positive research culture.
• The value of evidence is recognised, and education and training around research are facilitated. Opportunities to develop research careers or in overseeing the development of other researchers are enabled; this may include having protected time, inclusion in job plans and joint appointments across health and care providers and academic institutions.
• Ensuring that there is capacity and systems that support research through services like imaging, pathology and pharmacy, as well as finance and human resources.
• Individual organisations do not always have the necessary skills or services to support effective research and its impact, such as IP management, methodological expertise, regulatory compliance, statistical analysis, knowledge mobilisation expertise, genomics expertise, health informatics and data analytics. Mechanisms are needed to ensure that these can readily and rapidly be accessed across other health and care organisations, including from local authorities and other non-NHS care providers.

A UK Clinical Research Workforce Strategy is under development. ICSs should update their approaches to their research workforce once DHSC publishes this in 2023/24.

Example: Investing in the research workforce – developing capacity for chief investigators

Across the West Midlands NIHR CRN, an investment of approximately £750,000 to develop capacity for chief investigators returned additional research grant income of over £18 million in three years. This was achieved primarily by increasing the programme activity for consultants in areas where chief investigators were underrepresented.

The funding was provided through a competitive process and co-supported by the local NIHR CRN, with several local trusts jointly funded these scholars.

Kirk J, Willcocks J, Boyle P, Brocklehurst P, Morris K, Kearney R, et al (2022) Developing chief investigators within the NHS: the West Midlands clinical trials scholars programme. Clin Med 22(2): 149–52.

Kirk J, Reynolds F, Adey E, Boazman M, Brookes M, Brocklehurst P (2022) Developing paediatric chief investigators within the NHS: the Clinical Trials Scholars programme . Arch Dis Child Educ Pract Published online first: 22 February 2022. doi: 10.1136/archdischild-2021-322186

4. References

• Varnai P, Rentel M, Dave A, De Scalzi M, Timmerman W, Rosemberg-Mantes C, Simmonds P, Technopolis Group (2017) The impact of collaboration: The value of UK medical research to EU science and health .
• Boaz A, Hanney S, Jones T, Soper B (2015) Does the engagement of clinicians and organisations in research improve healthcare performance: a three-stage review. BMJ Open 5: e009415. doi:10.1136/ bmjopen-2015-009415 .
• Rees MR, Bracewell M (2019) Academic factors in medical recruitment: evidence to support improvements in medical recruitment and retention by improving the academic content in medical posts. Postgrad Med J 95(1124): 323-327. doi:10.1136/postgradmedj-2019-136501 .
• Ozdemir BA, Karthikesalingham A, Singha S, Poloniecki JD, Hinchliffe RJ, Thompson MM, et al (2015) Research activity and the association with mortality. PLoS ONE 10(2): doi.org/10.1371/journal.pone.0118253 .
• Hunn A (2017) Survey of the general public: attitudes towards health research . Health Research Authority.
• Angus RL, Hattingh HL, Weir KA (2022) Experiences of hospital allied health professionals in collaborative student research projects: a qualitative study. BMC Health Services Research 22(1). Available at: https://doi.org/10.1186/s12913-022-08119-7 .
• Newington L, Wells M, Adonis A, Bolten L, Bolton Saghdaoui L, Coffey M, et al (2021) A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine. BMC Health Serv Res 21(1). Available at: https://doi.org/10.1186/s12913-021-06354-y .
• Wenke RJ, Hickman I, Hulcombe J, Phillips R, Mickan S (2017) Allied health research positions: A qualitative evaluation of their impact. Health Res Policy Syst 15(6). Available at: https://doi.org/10.1186/s12961-016-0166-4

Annex 1 – Organisations that may be involved in regional or local research

• Clinical Research Networks (CRNs) , which will be retendered and renamed regional research delivery networks (RRDNs) from April 2024
• Applied Research Collaborations (ARCs)
• Biomedical Research Centres (BRCs)
• Experimental Cancer Medicine Centres (ECMCs) , jointly funded with Cancer Research UK
• Research Design Services (RDSs) and Clinical Trials Units (CTUs) which will be replaced by the NIHR Research Support Service from 1 October 2023
• Patient Recruitment Centres (PRCs)
• MedTech and In vitro diagnostic Co-operatives (MICs) , which will be replaced with HealthTech research centres from April 2024
• School of Public Health Research, School of Primary Care Research and School of Social Care Research
• Health Determinants Research Collaborations (HDRCs)
• Clinical Research Facilities (CRFs)
• Patient Safety Research Collaborations (PSRCs)
• Translational Research Collaborations (TRCs)
• Academic Health Science Centres (AHSCs)
• university teaching hospitals and all trusts that deliver research activity
• primary care organisations, including GP practices, that deliver research activity
• higher education institutions (HEIs)
• local authorities
• social care partners
• Local Government Association
• local and national charities that fund, collaborate in or support participation in research
• research and development offices in providers or CSUs, including primary care providers and ambulance, community and mental health trusts, and those in the VCSE sector
• UKRD members
• NHS subnational secure data environments for research
• NHS R&D Forum
• NHS Genomic Medicines Service Research Collaborative
• NHS Knowledge and Library Services
• Academic Health Science Networks (AHSNs) are often well linked with research organisations and infrastructure as part of their roles in development, adoption and spread of innovation.

Annex 2 – Public health and social care research

Public health research investigates issues that impact at a population rather than an individual level. This can be done within the NHS with system-level studies, such as secondary prevention of cardiovascular disease and examining the impact on health inequalities of changes to the NHS resource allocation formula, and outside the NHS for the wider determinants of health such as air quality, transport systems and housing. There is a substantial body of public health evidence for the clinical and cost effectiveness of prevention, health protection, health service redesign and addressing health inequalities.

Social care research aims to improve the lives of children and adults who need to draw on personal or practical care and support, and family members or other unpaid carers. It can include research around the introduction, use and impact of technologies, and changing social care interventions, policies and practice. Social care research also examines issues pertaining to the safeguarding of adults and children and workforce, commissioning of services, and questions about organisational and professional practice, including decision-making, training and the quality of care.

Publication reference: PR1662

Benefits of Referrals for Patients with Health-Related Social Needs

In a research letter recently published in JAMA Network Open , Eugenia (Genie) McPeek Hinz, Assistant DGIM Professor and Associate Chief Medical Information Officer for Duke University Health System and Physician Informatician, and colleagues developed a patient-centered metric known as the ‘successful connection rate’ (SCR) to assess meaningful outcomes for Social Drivers of Health (SDOH) referrals for patient needs across two time periods, one with federal funding for Community Based Organization (CBO) services and the other without.  NCCARE360/Unite Us is the first state-based coordinated care network consisting of healthcare, government, nonprofit, and other organizations that facilitates connection to social resources and referrals.  It includes more than 13,000 service listings and 26,000 service locations for most types of need across the state.

The study comprised of more than 80,000 referrals from the period (Oct 2020-March 2021), where referrals on NCCARE 360/Unite Us were supported by North Carolina’s Social Support Program supported community-based organizations and the second period (Oct 2021-Mar 2022) was not.  The team observed no difference in the closed loop rate (number of cases closed /total number of cases) between the two time periods, suggesting successful utilization of the NCCARE360 technology platform irrespective of funding. 

However, cases are marked as ‘closed’ regardless of whether patients actually received the referred resource/service.  Thus, the SCR metric was developed to assess rate of benefit accrued to referred patients. The team’s analysis found significantly substantial differences in the SCR between the two cohort periods (65% vs. 38%).  Notably, funding resources for the food domain are well developed for CBOs and the SCR remained consistent through both cohort periods (76% vs 71%).

“Without the necessary financial support, the best intentions of NCCARE/Unite Us and other similar state-based programs will fall short in impacting patient well-being and care,” noted Dr. McPeek Hinz.  “We need to prioritize these programs given the huge impact of social factors on overall health.”

As of January 2024, the Centers for Medicare and Medicaid Services requires screening all inpatients >18 years old across five SDOHs:  food, transportation, housing, interpersonal safety, and utilities.  This screening initiative complements the ambulatory screening program that began in January 2021 and has successfully screened more than 300,000 Duke patients.  The challenge now is automating connection to resources where possible, to meet patient’s needs, but also use care teams’ resources wisely for connection for other Health Related Social Needs (HRSN) that need more specific support.   The HRSNs align with recognized social determinants of health identified in the Healthy People 2030 report: economic stability; education access and quality; health care access and quality; neighborhood and built environment; and social and community context.  The report recognizes that need to address social determinants of health to improving the nation’s overall health and well-being and are the focus of several goals for the coming decade.

Citation :  Johnson FS, McPeek Hinz ER , Regan D, Nohria R, Moon G, Spratt SE. Measures of Referral vs Receipt of Social Services Among Patients With Health-Related Social Needs.   JAMA Network Open. 2024;7(4):e247021. doi:10.1001/jamanetworkopen.2024.7021 (

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Maternal and child health care access to skilled delivery services among Ghanaian rural mothers

• Original Paper
• Open access
• Published: 24 April 2024
• Volume 3 , article number  6 , ( 2024 )

Cite this article

You have full access to this open access article

• Awinaba Amoah Adongo   ORCID: orcid.org/0000-0002-0261-3295 1 ,
• Jonathan Mensah Dapaah   ORCID: orcid.org/0000-0002-9349-6273 1 ,
• Francess Dufie Azumah   ORCID: orcid.org/0000-0001-6023-8000 1 &
• John Nachinaab Onzaberigu 1  

Introduction

Most new-born babies are born at home in rural communities which is not new phenomenon due to lack of access to primary healthcare services and trained skilled health attendants, exposing mothers and children to a high risk of labour complications. The purpose of this study was to better understand factors influence rural women's access to primary health care and skilled delivery services as well as their reasons for using or not using maternal health care and skilled delivery services.

The study employed a social survey design with a quantitative approach to data analysis. Cluster Sampling was used, possibly based on rural communities, to efficiently collect data from different geographic locations. Simple random sampling individuals from each cluster ensures that all eligible individuals have an equal chance of being included in the study. This enhances the representativity of the sample. A total of 366 mothers were selected from four rural communities in the North East Region of Ghana. The choice of sample size considered factors like the study's objectives, available resources, and the desired level of statistical power. Data was primarily gathered through the administration of a questionnaire to the respondents. Factors considered for achieving representativity include, geographic representation, accessibility, healthcare infrastructure and healthcare professionals’ attitudes .

The study found that distance to health centres limits women's access to skilled delivery services. Lack of primary health facilities in the rural communities hamper maternal and child care services delivery. The attitude of health care professionals determines a mother’s utilisation of maternal health care and skilled delivery services.

The study contributes to the limited research on maternal health services and their impact on mother and child health in the study area. This study is one of the first to investigate into maternal health care as a key predictor of mother and child health in the study area. The study's theoretical lens was the Andersen and Newman Health Behavioural Model theory, which supports the explanation of distance, lack of primary health centres, attitudes and lack of skilled personnel to the non-utilisation of maternal and health services in rural communities. The study recommended that primary healthcare facilities and trained health professionals should be a priority of government in rural communities to promote maternal and child healthcare.

Avoid common mistakes on your manuscript.

Maternal and child health (MCH) is an international priority that has been debated for many years and is one of the most important public health service concerns (United Nations [UN], [ 1 ]). According to the United Nations, there were thousands of maternal deaths per year in 2019, and there were 18 infant fatalities per 100,000 live births worldwide. Sub-Saharan Africa and Southern Asia continue to record high maternal mortality rate globally (World Health Organisation [WHO], [ 2 ]). The Sustainable Development Goals (SDGs) set a target of a minimum of 70 maternal deaths per 100,000 babies born alive by 2030, however, maternal and child health issues continues to be an enormous obstacle in many countries. This suggests that the challenge of maternal and child still remains a concern to public particularly in sub-Saharan Africa.

The world's maternal mortality rate (MMR) in 2020 was 223 per 100,000 live births and to achieve a world-wide MMR of less than 70 by 2030 means that a yearly rate of reducing it drastically is required, an objective that has rarely been accomplished at the national level (WHO, [ 3 ]). Countries have banded together in the context of the SDGs to speeds up the decline in the death rate of mothers by 2030. SDG three includes the lofty objective of lowering the global MMR to less than 70 per 100,000 births, with none of the nation’s having an MMR that is more than multiple times the global mean. However, this is a major challenge in countries with limited resource setting, particular sub-Sharan Africa (SSA). There are numerous barriers to maternal and child health issues affecting maternal morbidity reduction in SSA. These factors could be attributed to poor health service location, a lack of health workers, a poor road network, and lack of service quality that put pregnant women at risk [ 4 , 5 , 6 ].

The MMR in Ghana is 310.00 per 100,000 live births, and the infant mortality rate is 31.78 deaths per 100,000 live births, according to Ghana Health Service (GHS, [ 7 ]). This an indication that the maternal and child mortality remains far short of the SDGs three target of 70 per 100,000 live births by 2030 in Ghana. The majority of maternal and infant mortality is triggered by the interaction of various economic, social, and health system factors such as lack of access to healthcare, health seeking behaviour, and socio-demographic behavioural variables [ 4 , 5 , 8 , 9 ]. These variables require further evaluation and comprehension in order to address issues of maternal and infant mortality.

The government of Ghana's key policies for lowering maternal mortality rates include providing free maternal health care services and expanding healthcare facilities in rural communities (GHS, [ 7 ]). These policy interventions can reduce maternal mortality to some extent, the national MMR target of 80% in every 100,000 child births. However, it is unknown the situation of primary healthcare services and skilled trained health professionals in the rural context. Studies have shown that national indicators on women's access to and use of maternal health care services in Ghana, particularly urban areas, and little research focuses on maternal and child health in Ghana's rural communities (Awoonor-Willians, [ 10 ]; [ 11 ]). Furthermore, these factors are understudied and underappreciated in rural Ghana, where the majority of these maternal complications occur. As a result, the goal of this study was to understand maternal and child healthcare access to primary healthcare and skilled delivery services as well as the factors influencing their use of these in rural communities in Northern Ghana. Maternal health service quality has a greater positive effect on utilisation rates than service proximity. Also, the quality of maternal health care in hospitals were higher than in primary care facilities [ 12 ]. Similarly, the cost of medications may discourage mothers from seeking maternal healthcare services. Additionally, the availability of health personnel and maternal health policies were among the majority of reasons for mothers not using medications while pregnant; the review that follows provides empirical research on why mothers do or will not seek medications and health worker assistance when pregnant [ 13 , 14 ].

There is gap in healthcare services in African countries and this often led to few people having access to healthcare facilities (WHO, [ 2 ]). As a result, money from developed countries has been the primary source of support for providing primary health care in many less developed countries worldwide (WHO, [ 15 ]). Donor funding for maternal health in less developed country has increased in recent years. Private clinics and hospitals are funded by entrepreneurs, so services from these health areas are prohibitively expensive for the average person to pay for pregnant women's health [ 16 ]. The improvement of health care centres and health professionals to provide maternal health service to mothers in rural areas, resulting in mothers' use of maternal health services in some rural areas where services are lacking, but most mothers in those areas may not seek maternal health service when they are pregnant because they may not have money or due to distance.

According to Iba et al. [ 17 ], requiring pregnant women to walk long distances and waste time before receiving health care and medication discourages many mothers. Similarly, if mothers do not have access to transportation to health care facilities that are far from their home, it will be difficult for them to access health care while pregnant because they will be unable to walk to the facility due to its location and how far it may be for the mother to go and get medication. There are a lot of literature on maternal health services that provide interesting findings, but there is a scarcity of research on maternal and child healthcare service access and skilled delivery services in rural communities in Ghana, so this study seeks to add to the literature.

Study area and context

The study was conducted in four rural communities which included Yunyoo, Yagaba, Chereponi, and Bunkpurugu which are located in the North East Region of Ghana as indicated in Fig.  1 . According to the GHS [ 7 ], there are the most rural communities in the North East Region of Ghana and lack primary healthcare services.

Map of Ghana, with the number 13 showing the study area

The study used a social survey design with probability techniques to sample mothers from four rural communities in Ghana's North East Region. The probability sampling method was used to select respondents from the larger population. It was necessary to ensure that everyone in the population has an equal chance of being selected for the survey, and that each respondent has an equal chance of being selected for the study, in order to ensure an accurate probability sample. Each person was assigned a number using a random number generator and the key was to avoid overrepresentation. The main benefit of probability sampling is that it allows the researcher to obtain accurate feedback about a larger population without polling the entire population. Simple random sampling was time consuming and tedious, especially with these larger samples [ 18 ].

Sampling in Ghana, like in many countries, is typically based on specific methodologies that aim to ensure representativeness of the population. However, achieving true random sampling can be challenging due to various constraints. Some concerns about potential limitations in achieving true random sampling include access and limited infrastructure and challenging terrain, especially in rural areas, can hinder the ability to reach and survey all segments of the population, leading to potential biases in the sample. Also, language barriers and cultural differences can affect the effectiveness of survey instruments and may result in underrepresentation. Unequal access to technology and digital devices may exclude certain segments of the population from surveys conducted through online or electronic means, introducing a potential bias in the sample. However, these limitations did not influence the results.

Study population

The study population consists of women in fertility age (15–49 years) within four communities which included Yunyoo, Yagaba, Chereponi, and Bunkpurugu in the North East Region. It involved women who had ever become pregnant and were still at their reproductive age. The estimated population was 340,700 women (GHS, [ 7 ]). Women in fertility age 15–49 years were sampled from the four communities in the North East Region. There are approximately 340,700 women in the estimated population (GHS, [ 7 ]). The target population consisted of women aged 15 to 49 who had given birth within the previous five years.

The sample size was derived with the aid of the formular below using a proportionate sample size at a confidence level of 95 per cent and confidence limit of 4. The confidence limit was reduced to 4 so as to get a larger sample size in order to have a more representative sample.

n: This represents the required sample size.

DEFF: Design Effect. It accounts for the design effect or the impact of clustering in the sampling process. If previous data has been collected in clusters or groups, the design effect adjusts the sample size to reflect the fact that observations within the same cluster may be more similar to each other than to observations in other clusters.

N: Total population size.

p: The estimated proportion of the population that has a certain characteristic. It is the proportion the researchers want to estimate.

1 − p: The complement of the estimated proportion.

d 2 : This represents the desired margin of error (precision) in estimating the population proportion.

Z 1  − α/2: The Z-score corresponding to the desired level of confidence (1 − α). This is often denoted as the critical value and is associated with the confidence level for the estimation.

α: The significance level, which is typically set at 0.05 for a 95% confidence level.

How population is organised in Ghana include the National Identification Authority (NIA) which is the primary government agency responsible for the registration and issuance of national identification cards. They conduct mass registration exercises to capture the biometric data of citizens, including fingerprints and facial features. Also, the Birth and Death Registry is responsible for registering all births and deaths in the country. Birth registration is crucial for establishing citizenship and providing individuals with official identification. Ghana Statistical Service (GSS, [ 19 ]) also plays a role in population data collection through censuses and surveys. These initiatives help in obtaining demographic information, economic indicators, and other relevant data. The Electoral Commission manages voter registration, which is a subset of the overall population registration. While its primary focus is on citizens eligible to vote, it contributes to the overall demographic data ([ 20 ], GSS, [ 19 ]).

With regard to completeness of population registration, especially in rural areas achieving complete population registration in rural areas can be challenging due to factors such as limited infrastructure, poor accessibility, and lower awareness of the importance of registration. To address challenges in rural areas, mobile registration units are often deployed. These units travel to remote locations to ensure that residents, even in distant and less accessible areas, have the opportunity to register. The government and relevant agencies conduct public awareness campaigns to educate citizens about the importance of registration. These campaigns often target rural areas where awareness might be lower. Collaborating with local authorities, community leaders, and grassroots organisations is essential for ensuring that registration efforts are accepted and supported at the community level ([ 20 ],GSS, [ 19 ]).

Theoretical context: behavioural model by andersen and newman in 1973

The study used the Andersen and Newman Health Behavioural Model (1973) to identify the factors influence the utilisation of health facilities in the rural communities. Health Behavioural Model states that some feature influence mothers to look for health services when pregnant. These features are in three set that may influence mothers to use health service when pregnant arrive: (1) predispose factor; (2) Enabling resources, (3) Actual or perceived need.

Predisposing characteristics

Factors which influence mothers to use MHS which may be the age at pregnancy, whether the early birth was successful, social factors, the work the mother does, the level the mother has be educated up to, the works the family do and whether the family has enough money [ 21 ]. When a mother has most of these factors, she is most likely to use services at health facility during pregnancy but if not, the mother will even find it difficult to afford health cost given a situation when the mother has no money or from a poor family.

Enabling characteristics

With regards to enabling characteristics, the health behavioural model has it that some factors have to be available for mother to be able to use health service. These factors are termed as enabling since they make access to health service easy to mothers. There are within the community and area the mother lives. Family factors which may include their level of income, family doctor, health insurance policy that mother may be with, the distance of mother’s house and the any nearby health facility [ 21 ].

Families with their own doctors will imply that the mother can easily get treatment for health services when pregnant but those families without a family doctor will have to rely on the community doctors at the private or public health centre. The enabling factors are central to mothers seeking for health services during pregnancy .

The next factor is the need-based factor of mothers and them looking for health services when pregnant. When mothers think that there is the need for them to look for medications during pregnancy then they will look for medications, but when mothers do not foresee the need then they will not look for health when pregnant (Anderson & Newman, [ 22 ]; [ 23 , 24 ]). The Andersen and Newman [ 25 ] model was used in this study to help identify the determinants of one's health service utilisation, assess inequality in access to health services, and facilitate policy-making for equitable access to care and health services in rural communities.

SData collection, management and analysis techniques

SIn this study, the target population included mothers in rural communities within the North East Region of Ghana. Clusters were identified which were the rural communities. A random selection method was to choose clusters from the larger population of rural communities in the North East Region. Contacting participants was done through community engagement. The research established contact with community leaders and members to explain the purpose and importance of the study and seek their support and cooperation. Obtained informed consent from potential participants, ensuring they understand the study and voluntarily agree to participate. The authors used systematic sampling within the selected clusters to identify households or individuals. A structured questionnaire was used to collect quantitative data on factors influencing women's access to primary healthcare and skilled delivery services [ 18 ].

The train enumerators were PhD Candidates who administered the questionnaire. The candidates with training in both quantitative and qualitative research methodologies ensure a robust and nuanced approach to data collection. They were also familiar with the local culture and language to facilitate effective communication to assist participants who could not read. Ensuring inclusivity, the researchers conduct extensive community outreach to ensure that potential participants from diverse backgrounds and situations are aware of the study. Accessibility measures, the researchers implement measures to make the study accessible to all eligible participants, considering factors such as mobility, language barriers, and cultural sensitivity.

The dependent variables were utilisation of maternal health care and skilled delivery services. This variable was operationalised as a binary outcome – utilised or did not utilise maternal health care and skilled delivery services. Based on responses to survey questions regarding participants' utilisation of maternal health care services during pregnancy and delivery. The independent variables were distance to health centres. The distance in kilometres from participants' residences to the nearest health centres. Measured using GIS or self-reported estimates during interviews. Another independent variable was availability of primary health facilities and the presence or absence of primary health facilities in the participants' rural communities. The last independent variable was attitude of health care professionals and participants' perception of health care professionals' attitudes, measured through Likert scale questions in the survey and it was measured based on responses to questions assessing participants' satisfaction or dissatisfaction with the attitudes of health care professionals.

Additional information on previous pregnancies, births, and complications were captured data on the number of previous pregnancies, births, and any complications experienced during these events. Participants provided the number of previous pregnancies and births, and details on complications were recorded based on participants' self-reporting. Assess the impact of genital mutilation on maternal health care utilisation included questions in the survey that inquire about participants' experiences with genital mutilation and its potential influence on seeking maternal health care services (GHS,[ 7 ]; GSS, [ 19 ]).

Data cleaning process the authors identified and addressed missing data through imputation or exclusion, depending on the extent of missingness and patterns. Also, we use statistical methods to identify and investigate outliers that may skew the data. The authors adjusted or removed outliers based on the study's goals. Examined data for inconsistencies, ensuring that responses are logical and coherent. Addressed any conflicting information through cross-validation or follow-up with participants. Validated the coding of categorical variables and ensure consistency in coding schemes throughout the dataset. Checked for errors in data entry and correct any inaccuracies. Cross-verify with original survey instruments [ 26 ].

Quantitative analysis was used which involved descriptive statistics and inferential statistics. The quantitative approach was used to ensure that major variables were numerically measured and to provide statistical data on factors influencing women's use of maternal and skilled delivery care. The quantitative approach helped the researchers to gather empirical data that gave readers and policy makers a better understanding of mother’s use and non-use of maternal and skilled delivery care using quantifiable data [ 18 ].

Respondents’ background information

According to the data in Table  1 , 15.6% ( n  = 57) of the 366 respondents were single, while 63.1% ( n  = 231) of the respondents were in a marital union recognised by the community. Only 6.8% ( n  = 25) of the respondents had divorced, 10.9% ( n  = 40) had lost their partners (widow), and 3.6% ( n  = 13) were in a cohabitation relationship. Respondents between the ages of 31 and 35 account for the highest percentage of 28.1% ( n  = 103). This was followed by those aged 26–30 years, who had a percentage of 24% ( n  = 88). Respondents aged 46–49 years comprised the minority group, with a valid percentage of 4.4% ( n  = 16). Again, a close examination of the respondents' age range revealed that very few of those who participated in the study were aged years or less. According to the study, 47% of respondents ( n  = 172) had no formal education. At least 24% ( n  = 88) and 20.5% ( n  = 75) of respondents had only basic/primary education, respectively. The valid percentages for senior high school (including technical and vocational education) and tertiary education were 5.5% ( n  = 20) and 3% ( n  = 11), respectively. The majority of them 47.8% ( n  = 175) of respondents were traditional believers, 43.4% ( n  = 159) of respondents were Christians, 7.4% ( n  = 27) of respondents were Muslims, 1.4% ( n  = 5) of respondents were free thinkers, and 92% ( n  = 335) of respondents cannot read.

Mothers’ place of delivery during child birth

The study established that more births by mothers being delivered at home than child births that occurred at the hospital/clinic, with the exception of most mothers having their third child at the hospital. Most mothers who had more than one child (two children) delivered at home 47% of the time, compared to 27.8% and 2.2% of mothers who delivered at the hospital and clinic, respectively. According to the study, only 37.7% ( n  = 138) of mothers had their third delivery in a hospital, while the majority of respondents (63.9%) had their last birth at home. According to field data, most women still deliver at home, according to a general examination of mothers' places of delivery in the North East Region. However, one cannot deny that the factor plays a significant role; 4 out of every 10 mothers had their first child at a hospital/clinic.

Month mothers received ANC during pregnancy

Table 2 shows the months when the majority of respondents visited the hospital during their previous pregnancy, according to the findings. The majority of mothers in the North East Region (37.2% and 38.3%, respectively) began visiting ANC during the second and third months of their pregnancy, according to data in Table  2 . Only 7.1% of mothers sought ANC during the first month of their pregnancy. According to Table  2 , 94.3% ( n  = 345) of respondents had a live birth within the last five years during their most recent childbirth. Only 5.7% ( n  = 21) of those polled experienced a stillbirth during their most recent pregnancy.

Univariate analyses (chi-square testing)

The researchers investigated the factors that influence women's use of maternal health care services in the North East Region, as well as access to skilled delivery services. The dependent variables were ANC use, delivery care at a health centre, and postnatal care at a health centre, while the independent variables were marital status, age, education, religion, distance, and the availability of skilled delivery personnel. The test results are shown in Tables 6 , 7 , and 8 using the Chi-square (2) and an alpha of 0.05 (= 0.05).

The Chi-square ( χ 2 ) was computed to determine whether socio-demographic factors such as marital status, age, education, religion, distance, and availability of skilled delivery personnel have a relationship with mothers' utilisation of ANC. The five married categories were recoded as single and married; age group was recoded as youth and older; education was recoded as not educated and educated; and distance was recoded as within the community and far from the community. This was done to ensure that each cell had at least five respondents, as the initial codes resulted in some cells having fewer than five, which was not consistent with the Chi-square test assumptions.

The Chi-square ( χ 2 ) test results as depicted in Table  3 indicated a statistically significant relationship between marital status χ 2 (1, n  = 366) = 6.281, p -value = 0.012(S), ά = 0.05, age of mothers χ 2 (1, n  = 366) = 8.702, p -value = 0.003, education of mothers χ 2 (1, n  = 366) = 4.007, p -value = 0.045, religion χ 2 (2, n  = 366) = 12.124, p -value 0.002, and distance χ 2 (1, n  = 366) = 5.393, p -value = 0.020, all at ά = 0.05 and mothers’ utilisation of maternal health care services in the North East Region.

The Chi-square χ 2 test results of the mothers' socio-demographic factors, such as married status, age, education, religious background, and distance, were found to have a significant relationship with their use of ANC. When mothers marry, their partners contribute to MHC costs such as transportation to the health care centre. Similarly, older women learn through experience whether they need to access MHCS or not, whereas educated young women have a better understanding of the need for maternal health care services during pregnancy. To determine whether mothers’ socio-demographic factors have relationship on utilisation of delivery care at the health, the Chi-square ( χ 2 ) was used as depicted in Table  4 . The Chi-square ( χ 2 ) in Tables 4 and 5 showed that there is significant relationship between mothers’ marital status, χ 2 (1, n  = 366) = 10.909, p -value = 0.001, age of mothers χ 2 (1, n  = 366) = 5.222, p -value = 0.022, mothers’ education χ 2 (1, n  = 366) = 7.893, p -value = 0.005, religious background χ 2 (2, n  = 366) = 10.020, p -value = 0.007 and distance χ 2 (1, n  = 366) = 7.372, p -value 0.007, at ά = 0.05.

Logistic regression model

To identify socio-demographic factors that influence the likelihood that mothers in the North East Region would use maternal health care services, binary logistic regression was used. Six independent variables were included in the models (Marital status, Age, Education, Religion, Distance and Availability of skilled delivery personnel). Three different models were developed, each with antenatal care, delivery care at a health centre, and postnatal care as separate dependent variables. The first model, which included mothers’ socio-demographics and use of ANC, contained all statistically significant predictors, χ 2 (7, n  = 366) = 29.649, p -value = 0.000, indicating that the model was able to distinguish between mothers who used and did not use ANC during pregnancy and which explained 7.8% (Cox and Snell R square) and 11.2% (Nagelkerke R square) of the variation in mothers' utilisation of antenatal care in the North.

The second model included mothers' socio-demographic information as well as their use of delivery care in the North East Region. This model was also statistically significant, χ 2 (7, n  = 366) = 33.312, p -value = 0.000, implying that the second model could predict mothers who used delivery care at a health centre during childbirth and those who did not in the North East Region. This explained between 8.7% (Cox & Snell R Square) and 12.2% (Nagelkerke R Square) of the variations in mothers' use of delivery care in the district (see Table 7 ).

The last model was computed to determine mothers’ socio-demographic and use of postnatal care in health centre after child birth. This model of showed statistically significant, χ2 (7, n  = 366) = 27.203, p -value = 0.000, meaning that it was able to predict mothers who used postnatal care at health centre after child birth and those who did not, which also explained between 7.2% (Cox & Snell R Square) and 10% (Nagelkerke R Square) of the variation in mothers use of postnatal care at health centre after child birth as showed in Table 8 .

As showed in model 1 (Table  6 ) and model 2 (Table  7 ) only one independent variable (education) made a statistically significant contribution to the models which predicted mothers’ use of ANC and delivery care whilst in model 3 (Table  8 ) only one independent variable (availability of skilled delivery personnel) of mothers made statistically significant contribution to the model which predicted mothers’ use of postnatal care at health centre after child birth. An elaborated interpretation of the results with regards to the various statistics is presented beneath the Tables  6 ,  7 and 8 .

The beta (B) values in the first column of Table  6 represented the co-efficient of the independent variables entered into the model. From the Table  6 , it was observed that education of mothers recorded the highest beta value (0.607) and with the least value of beta recorded for religious (-2.300). This means that education is a strong predictor of utilisation of ANC in the North East Region. Only education influence use of ANC services positively.

The Wald values in the second column of Table  6 also indicated the contribution made by each of the independent variables to the model which predicts the utilisation of ANC services in the North East Region. As indicated Table  6 , it was religion (4.904) and age (4.375) which mostly made significant contribution to mothers’ use of ANC services.

The p -values in the Table  6 also indicated the variable or set of variables that significantly predict mothers’ utilisation of ANC services in the North East Region. From the results in Table  6 , only religion (0.035) and age (0.027) proved to be the only significant determinants or predictors of mothers’ utilisation (model) of ANC in the North East Region, as they recorded p -values less than 0.05. The last column in Table  6 indicated the odds ratios (Exp(B)) for each of the independent’s variables. To determine which socio-demographic factors were strong predictors of mothers’ use of postnatal care services in the North East Region. The beta (B) values in the beta (B) column of Table 8 showed that only NHIS (B = 0.028) influences mothers’ use of postnatal care positively in the North East Region. All the others predictors have negative influence on mothers’ use of postnatal care. The Wald column in Table 8 showed that marital status (9.073) and religion (6.260) made the most contribution to the model in predicting mothers’ socio-demographic factors and use of postnatal care services whilst education and availability of skilled delivery personnel made the less contribution to the model with Wald values of (0.017 and 0.009) respectively.

The model on mothers’ socio-demographic and use of delivery care showed that education recorded that the highest Beta (B) of (1.221) meaning that education is a strong predictor of mothers’ utilisation of delivery care positively. The data in Table  7 showed that religion negatively influence mothers’ use of delivery care than all the others variables. A critical looked at all the Beta (B) showed that all the variables except education and Availability of skilled delivery personnel influence mothers’ use of skilled delivery care negatively. The study further found that marital status with Wald value of (6.345) and religion with Wald value of (4.877) made the most contribution to the model in predicting mothers’ use of skilled delivery care in the North East Region. NHIS made the less contribution to the model with Wald value of (0.065). Only religion with p -value of (0–026) and marital status with p -value of (0.012) were the only significant determinants or predictors of mothers’ use of delivery services. These recorded p -values < 0.05. This means the others variables were not significant predictors of mothers’ use of delivery care services. The odds ratio (Exp(B)) on this model revealed that educated mothers were three times (3.390) more likely than uneducated mothers to use delivery care. In the North East Region, Christians were 90% more likely than non-Christians to use delivery care.

According to the p-values column in Table  8 , the only significant determinants or predictors of mothers' use of postnatal care services in the North East Region were marital status ( p -value = 0.003) and religion ( p -value = 0.012). The p -values for these two socio-demographic factors were less than 0.05.

From the data presented in Table  8 ; the model on mothers’ socio-demographic factors and use of postnatal care, the Exp(B) represents the ratio-change in the odds of mothers’ use of postnatal care for a one-unit change in the predictors (mothers’ socio-demographic). The Exp(B) for availability of skilled delivery personnel is equal to 1.028, which means that the odds of a mothers who had available skilled delivery personnel at the North East Region who utilised postnatal care were 1.028 times the odds of mothers without availability of skilled delivery personnel in the district. In other words, mothers who with availability of skilled delivery personnel were 1.028 times more likely to use postnatal care compared to mothers lack skilled delivery personnel. This study results implied that availability of skilled delivery personnel increases mothers’ use of postnatal by 1.028 times in the region. This means that more mothers were able to utilise postnatal care services following availability of skilled delivery personnel. Educated mothers were 0.941 (94%) more likely to use postnatal care services compared to uneducated women in the North East Region. Compared to non-Christians’ mothers, Christians’ mothers were 0.98 more likely to use postnatal care. This showed that the traditional beliefs made most mothers to fail to use postnatal care services.

The odds ratio, represents the change in odds of being in one of the outcome categories when the value of a predictor increases by one unit. Table 6 showed that, when compared to uneducated women, educated women were more likely to use ANC in the North East Region.

The findings revealed that the majority of the women in the study area gave birth at home due to factors such as distance, a lack of health care, and poverty. This adds to the labour complications during delivery. According to the literature, the location of a woman's delivery during childbirth is critical in reducing complications [ 27 ]. The findings proposed that primary healthcare facilities be established in rural communities in order to save the lives of rural women. Mothers should also be encouraged to give birth in a health care facility (hospital/clinic) in the presence of a trained professional health care practitioner such as a midwife, doctor, or nurse (Alkafaji and Al-Shamery, [ 28 ]). However, due to a lack of health facilities and qualified trained paramedic staff, the communities studied in Ghana lack professionals capable of providing maternal health care delivery services to mothers during childbirth. The findings contradict the literature, which claims that Ghanaian women meet the WHO maternal healthcare requirement by using facilities [ 2 ]. Furthermore, the findings revealed that most rural areas in Ghana lack health care centres and trained health care professionals required to provide rural mothers with delivery care, and the findings are consistent with the findings that most rural communities in Ghana lack healthcare facilities and healthcare professionals (Alkafaji & Al-Shamery, [ 28 ]).

According to the findings, the most common reason given by mothers for not attending ANC during the first month of their pregnancy was that most women are unable to detect pregnancy during the first month. The timing of a mother’s access to ANC services is critical during pregnancy. The findings imply that pregnant women in the study area lack knowledge, which could be attributed to a lack of health education in rural communities. According to WHO [ 29 ] and Ghana Health Services [ 30 ], the first, second, and third months of pregnancy are the most critical for mothers to use ANC because health professionals can examine the mothers and the foetus and make necessary medical recommendations. The findings, however, contradict the WHO recommendation for the first, second, and third months of pregnancy. Furthermore, the findings contradict the Ghana Demographic and Health Survey (GDHS, [ 31 ]), which recommends monthly antenatal visits for the first seven months of pregnancy, after which pregnant women must visit every two weeks for the next eight months (GDHS, [ 32 ]). Mothers should seek ANC as early as the first or second month of their pregnancy. According to the findings, women should be encouraged to begin visiting the health centre during their previous pregnancy.

According to the findings, women usually discover they are pregnant during the second and third month after missing their menstrual period. This implied that most mothers, regardless of educational level, recognise the value of ANC. Surprisingly, some mothers were unable to recall the month in which they first visited ANC during their pregnancy. These mothers couldn’t tell you how many times they were admitted to the hospital during their previous pregnancy. This implied that some mothers do not see the need for ANC during pregnancy and, as a result, place less emphasis on the number of visits to the hospital for ANC. The findings contradict the literature, which suggests that maternal educational level has a significant influence on healthcare utilisation [ 6 , 33 ].

According to the study’s findings, some mothers in the North East Region have had stillbirths in the last five years. This meant that some children died during delivery in the study area, which is concerning for the mothers who live there. Mothers who had no idea how many times they had attended ANC and those who did not visit ANC services in the early months of their pregnancy may have been among the few respondents who had stillbirths. The findings contradict previous research that found that family planning and fertility preference, as well as free maternal healthcare, reduced maternal and stillbirth rates in Ghana [ 34 ],[ 35 ] [ 36 , 37 ].

According to the findings, socio-demographic factors such as women’s marital status, age, education, religious background, and distance have a significant relationship with mothers' use of health-care delivery services. The findings corroborated Dalaba et al. [ 8 ] and Dotse-Gborgbortsi et al.’s [ 12 ] findings that married women received assistance from their husbands during delivery to the nearest health facility. According to Banchani and Tenkorang [ 38 ], as well as Bellerose et al. [ 39 ], studies conducted in rural Africa revealed that husbands’ religious backgrounds influenced mothers’ use of skill delivery. The findings also lend support to the Andersen behavioural model, which enables characteristics on access to healthcare facilities.

According to the Chi-square test results, mothers’ marital status, age, education, religious affiliation, and distance have a significant relationship with mothers' use of maternal health care services during delivery in the North East Region. According to the literature, socio-demographic characteristics and behavioural variables have a significant influence on healthcare facility utilisation [ 4 , 5 , 9 , 40 ].

The findings support the Andersen behavioural model, which states that characteristics of pregnancy age influence maternal service utilisation. The findings, however, contradict the literature, which indicates that married and educated women use antennal care services more than unmarried and uneducated women [ 16 , 17 , 41 ].

The problem here is that most mothers do not see the need to visit a health care facility after giving birth. Only married women and those whose religious beliefs support orthodox medicine visit the health care centre after delivery. The findings are consistent with previous research showing that women who receive antenatal and delivery care are more likely to receive postnatal care after childbirth [ 4 , 5 , 11 , 42 ].

According to the study, the majority of mothers do not seek medical attention after giving birth. After giving birth, few mothers visited health care centres or used postnatal care services unless their child was sick. This could be due to the fact that the North East Region has many traditional healers who can administer herbal medicine to mothers and their children after birth, and thus mothers did not consider the need for postnatal care. The findings contradict the literature, which claims that free maternal health care has increased utilisation [ 36 , 43 ],GHS, [ 30 ]).

The findings of this study confirmed the findings of the Ghana Demographic and Health Survey [ 31 ] and Ghana Demographic and Health Survey [ 44 ] studies, which found that a woman’s education was important in ANC utilisation in Ghana. Also, Vizheh et al. [ 14 ] discovered, through an analysis of DHS data from Bangladesh, Malawi, Bolivia, and the Philippines, that a woman’s education was a key determinant of mothers’ use of ANC services, just as Stanton et al. [ 24 ] did in their review of DHS data from developing countries. The North East Region's high percentage of educated mothers using ANC services calls for girl-child education.

The study also discovered that young mothers (those under the age of 30) were 40% less likely to use ANC services than older mothers. This supported the findings of Vasconcelos et al. [ 45 ]. In Bangladesh, women’s age was found to have a significant influence on their use of ANC. In addition, mothers with NHIS cards were more likely to use ANC than those without. This meant that the implementation of NHIS had had a significant impact on mothers' use of ANC services in the North East Region. The study also discovered that Christians were more likely than non-Christians in the North East Region to use ANC. According to the study findings, non-Christians seek advice from traditional healers and traditional birth attendants during pregnancy. This study confirmed the findings of Sunguya et al. [ 46 ], who found that only 32.7% of traditional believers visited ANC in Uganda in 2020. The study found that the people of the North East Region’s traditions influence their use of ANC.

The study confirmed the findings of Saaka et al. [ 47 ], Nachega et al. [ 48 ], and Misu and Alam [ 49 ], which found that educated women were more likely than uneducated women to use delivery care. Most educated women emphasise the importance of delivery care and the importance for mothers to deliver at a centre under the supervision of skilled trained health professionals to reduce the risks during childbirth and the potential consequences that may occur during delivery. In addition, Anwar et al. [ 42 ] discovered that religious believers have a significant influence on maternal health care utilisation in Bangladesh. Similarly, Anselmi et al. [ 13 ] and Adamu [ 23 ] confirmed this by indicating that religious beliefs in developing countries such as Africa made achieving the SDGs of improved maternal health difficult. The findings of this study confirmed the findings of Bolduc [ 50 ] and Esena and Sappor [ 51 ], who found that marital status significantly predicts women's use of postnatal care services. The findings are consistent with the literature that the availability of skilled delivery personnel influence the health seeking behaviour of mothers (Adong et al., [ 4 ],Ghana Health Servivr Human Resource Annual Report, [ 52 ] and 2018; [ 53 ]).

The findings of the study demonstrated a theoretical relationship between the availability of skilled delivery paramedical staff, knowledge of pregnancy age, access, distance, and enabling characteristics such as poverty, gender, and traditional treatment, and the use of maternal healthcare services in rural communities. The study discovers a new relationship between the availability of skilled delivery professionals and access and distance, which has implications for the development of public health theories and models.

The study implications and recommendations

According to the findings of the study, the following policy prescriptions should be implemented: increase access to skilled delivery care in the North East Region, as the study discovered that a lack of skilled delivery care limits mothers' access and use of MHCS. To supplement the availability of traditional healers and traditional birth attendants in the area, people should have access to health centres and professional health personnel. Furthermore, the Ghana Health Service should increase public health education in rural areas.

The findings strongly demonstrate that the Ministry of Health and the Ghana Health Service must take practical steps to increase education about the importance of having ANC with a skilled provider, as well as having the first 24 h of recommended primary healthcare services. The findings also show that education level, wealth status, marital status, antenatal care utilisation, health insurance coverage, getting medical help for self-getting permission to go, and distance to health facility all have a significant relationship with MCH utilisation. This implies that tailored educational and pro-MCH interventions must be streamlined in order to recognise the tones influenced by these factors.

The study recommended that mothers be educated about the importance of using skilled delivery care once more. By increasing MHS utilisation, women should be educated on the importance of maternal and child health. Women must regain economic empowerment in order to pay their own MHCS bills. Unemployed mothers should look for work, whether through trade, farming, or raising farm animals, to enable them to earn a living and pay their own medical bills while receiving MHS and they must not rely solely on their partners.

The study also recommended that the government organise training services for the area’s traditional birth attendants (TBAs) in order to provide them with the professional skills required to handle child delivery. The government should create a framework for regulating the activities of traditional herbal practitioners. They should also be trained, and the government should, if possible, integrate traditional and orthodox medicine in the area’s public hospital/clinic.

According to the study, health personnel who accept postings to the North East Region should be given special motivation packages by the local people and district assembly in order to help increase the number of health personnel in the area and solve the problem of insufficient health personnel in the area. The nurse and other health workers in the area educated mothers about the importance of receiving postnatal care after giving birth, as most did not appear to be doing so. To encourage others to learn from the few mothers who used all of these MHCS, the government should implement policies that reward mothers who use ANC, skilled delivery care, and postnatal care.

Limitations of the study

There is no research without limitations (Prince & Murnan, [ 54 ]). Survivor bias may occur as this sample may not be the representative of the entire population due to the exclusion of individuals who did not survive or participate until the end of the study. To Ensure that the study’s data collection period was sufficiently long to capture a diverse range of participants, reducing the impact of survivor bias. Also, inclusion criteria to avoid unintentional exclusions. Another limitation was selection bias which may occurred in certain groups of the population and were more or less likely to be included in the study, leading to a non-representative sample. The simple random sampling was employed to minimise selection bias. Sampling bias was another potential limitation as selected sample may not accurately represent the entire population. Employing random sampling techniques to ensure that each member of the population has an equal chance of being selected. The study's findings may have limited generalisability if the sample did not represent entire population. The authors clearly defined the population of interest and acknowledge any limitations in generalisability. While these mitigation strategies can reduce the impact of biases, it's essential to acknowledge that this study is not entirely free from these limitations (Prince & Murnan, [ 54 ]).

The study has contributed to a better understanding of the factors that influence mothers’ access to and utilisation of skilled delivery care services in rural communities throughout Ghana, particularly in the North East Region. According to the findings of the study, mothers' socio-demographic factors such as married status, age, education, religious background, and distance to health centre, as well as the availability of skilled delivery personnel, have a significant relationship with their access to and use of maternal care and skilled delivery care services. The study’s findings on access to skilled delivery care revealed that women’s marital status, age, education, religious background, and distance have a significant relationship with their use of skilled delivery care at health care facilities. Finally, the Chi-square (2) test results for postnatal care revealed that only mothers’ marital status and religious background were found to have a significant relationship with mothers’ use of postnatal care. Finally, in the North East Region, the only significant determinants or predictors of mothers' use of postnatal care services were marital status ( p -value = 0.003) and religion ( p -value = 0.012).

Ethical statement and informed consent

The study was ethically approved by the Committee on Human Rights, Publication, and Ethics College of Health Sciences, School of Medicine and Dentistry, Kwame Nkrumah University of Science and Technology. All participants signed/thumb printed written informed consent forms.

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Awinaba Amoah Adongo, Jonathan Mensah Dapaah, Francess Dufie Azumah & John Nachinaab Onzaberigu

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Awinaba Amoah Adongo conceptualised the research topic. He was in charge of the write-up. The data collection and the data analysis of the findings were carried out by Awinaba Amoah Adongo and John Nachinaab Onzaberigu. Professor Jonathan Mensah and Dr. Francess Dufie Azumah were the supervisors for the study. They edited and gave technical assistance in the conduct of the study. They also suggested the methods to use in conducting the study. They also provided technical advice on the statistical techniques used in the analysis.

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Correspondence to Awinaba Amoah Adongo .

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This study has been reviewed and approved by the Kwame Nkrumah University of Science and Technology Ethical Committee. The committee has ensured that this study meets the ethical standards required for research involving human participants.

Participants involved in this study have voluntarily agreed to take part after being provided with detailed information regarding the study's purpose, procedures, potential risks, and benefits. They have provided their informed consent prior to participating, understanding that their involvement is entirely voluntary and that they have the right to withdraw at any time without penalty or prejudice.

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Adongo, A.A., Dapaah, J.M., Azumah, F.D. et al. Maternal and child health care access to skilled delivery services among Ghanaian rural mothers. Res Health Serv Reg 3 , 6 (2024). https://doi.org/10.1007/s43999-024-00042-0

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• Black Americans Have a Clear Vision for Reducing Racism but Little Hope It Will Happen

Many say key U.S. institutions should be rebuilt to ensure fair treatment

Table of contents.

• Black Americans see little improvement in their lives despite increased national attention to racial issues
• Few Black adults expect equality for Black people in the U.S.
• Black adults say racism and police brutality are extremely big problems for Black people in the U.S.
• Personal experiences with discrimination are widespread among Black Americans
• Black adults see voting as the most effective strategy for moving toward equality in the U.S.
• Some Black adults see Black businesses and communities as effective remedies for inequality
• Black Americans say race matters little when choosing political allies
• The legacy of slavery affects Black Americans today
• Most Black adults agree the descendants of enslaved people should be repaid
• The types of repayment Black adults think would be most helpful
• Responsibility for reparations and the likelihood repayment will occur
• Black adults say the criminal justice system needs to be completely rebuilt
• Black adults say political, economic and health care systems need major changes to ensure fair treatment
• Most Black adults say funding for police departments should stay the same or increase
• Acknowledgments
• Appendix: Supplemental tables
• The American Trends Panel survey methodology

Pew Research Center conducted this analysis to understand the nuances among Black people on issues of racial inequality and social change in the United States. This in-depth survey explores differences among Black Americans in their views on the social status of the Black population in the U.S.; their assessments of racial inequality; their visions for institutional and social change; and their outlook on the chances that these improvements will be made. The analysis is the latest in the Center’s series of in-depth surveys of public opinion among Black Americans (read the first, “ Faith Among Black Americans ” and “ Race Is Central to Identity for Black Americans and Affects How They Connect With Each Other ”).

The online survey of 3,912 Black U.S. adults was conducted Oct. 4-17, 2021. Black U.S. adults include those who are single-race, non-Hispanic Black Americans; multiracial non-Hispanic Black Americans; and adults who indicate they are Black and Hispanic. The survey includes 1,025 Black adults on Pew Research Center’s American Trends Panel (ATP) and 2,887 Black adults on Ipsos’ KnowledgePanel. Respondents on both panels are recruited through national, random sampling of residential addresses.

Recruiting panelists by phone or mail ensures that nearly all U.S. Black adults have a chance of selection. This gives us confidence that any sample can represent the whole population (see our Methods 101 explainer on random sampling). Here are the questions used for the survey of Black adults, along with its responses and methodology .

The terms “Black Americans,” “Black people” and “Black adults” are used interchangeably throughout this report to refer to U.S. adults who self-identify as Black, either alone or in combination with other races or Hispanic identity.

Throughout this report, “Black, non-Hispanic” respondents are those who identify as single-race Black and say they have no Hispanic background. “Black Hispanic” respondents are those who identify as Black and say they have Hispanic background. We use the terms “Black Hispanic” and “Hispanic Black” interchangeably. “Multiracial” respondents are those who indicate two or more racial backgrounds (one of which is Black) and say they are not Hispanic.

Respondents were asked a question about how important being Black was to how they think about themselves. In this report, we use the term “being Black” when referencing responses to this question.

In this report, “immigrant” refers to people who were not U.S. citizens at birth – in other words, those born outside the U.S., Puerto Rico or other U.S. territories to parents who were not U.S. citizens. We use the terms “immigrant,” “born abroad” and “foreign-born” interchangeably.

Throughout this report, “Democrats and Democratic leaners” and just “Democrats” both refer to respondents who identify politically with the Democratic Party or who are independent or some other party but lean toward the Democratic Party. “Republicans and Republican leaners” and just “Republicans” both refer to respondents who identify politically with the Republican Party or are independent or some other party but lean toward the Republican Party.

Respondents were asked a question about their voter registration status. In this report, respondents are considered registered to vote if they self-report being absolutely certain they are registered at their current address. Respondents are considered not registered to vote if they report not being registered or express uncertainty about their registration.

To create the upper-, middle- and lower-income tiers, respondents’ 2020 family incomes were adjusted for differences in purchasing power by geographic region and household size. Respondents were then placed into income tiers: “Middle income” is defined as two-thirds to double the median annual income for the entire survey sample. “Lower income” falls below that range, and “upper income” lies above it. For more information about how the income tiers were created, read the methodology .

More than a year after the murder of George Floyd and the national protests, debate and political promises that ensued, 65% of Black Americans say the increased national attention on racial inequality has not led to changes that improved their lives. 1 And 44% say equality for Black people in the United States is not likely to be achieved, according to newly released findings from an October 2021 survey of Black Americans by Pew Research Center.

This is somewhat of a reversal in views from September 2020, when half of Black adults said the increased national focus on issues of race would lead to major policy changes to address racial inequality in the country and 56% expected changes that would make their lives better.

At the same time, many Black Americans are concerned about racial discrimination and its impact. Roughly eight-in-ten say they have personally experienced discrimination because of their race or ethnicity (79%), and most also say discrimination is the main reason many Black people cannot get ahead (68%).  

Even so, Black Americans have a clear vision for how to achieve change when it comes to racial inequality. This includes support for significant reforms to or complete overhauls of several U.S. institutions to ensure fair treatment, particularly the criminal justice system; political engagement, primarily in the form of voting; support for Black businesses to advance Black communities; and reparations in the forms of educational, business and homeownership assistance. Yet alongside their assessments of inequality and ideas about progress exists pessimism about whether U.S. society and its institutions will change in ways that would reduce racism.

These findings emerge from an extensive Pew Research Center survey of 3,912 Black Americans conducted online Oct. 4-17, 2021. The survey explores how Black Americans assess their position in U.S. society and their ideas about social change. Overall, Black Americans are clear on what they think the problems are facing the country and how to remedy them. However, they are skeptical that meaningful changes will take place in their lifetime.

Black Americans see racism in our laws as a big problem and discrimination as a roadblock to progress

Black adults were asked in the survey to assess the current nature of racism in the United States and whether structural or individual sources of this racism are a bigger problem for Black people. About half of Black adults (52%) say racism in our laws is a bigger problem than racism by individual people, while four-in-ten (43%) say acts of racism committed by individual people is the bigger problem. Only 3% of Black adults say that Black people do not experience discrimination in the U.S. today.

In assessing the magnitude of problems that they face, the majority of Black Americans say racism (63%), police brutality (60%) and economic inequality (54%) are extremely or very big problems for Black people living in the U.S. Slightly smaller shares say the same about the affordability of health care (47%), limitations on voting (46%), and the quality of K-12 schools (40%).

Aside from their critiques of U.S. institutions, Black adults also feel the impact of racial inequality personally. Most Black adults say they occasionally or frequently experience unfair treatment because of their race or ethnicity (79%), and two-thirds (68%) cite racial discrimination as the main reason many Black people cannot get ahead today.

Black Americans’ views on reducing racial inequality

Black Americans are clear on the challenges they face because of racism. They are also clear on the solutions. These range from overhauls of policing practices and the criminal justice system to civic engagement and reparations to descendants of people enslaved in the United States.

Changing U.S. institutions such as policing, courts and prison systems

About nine-in-ten Black adults say multiple aspects of the criminal justice system need some kind of change (minor, major or a complete overhaul) to ensure fair treatment, with nearly all saying so about policing (95%), the courts and judicial process (95%), and the prison system (94%).

Roughly half of Black adults say policing (49%), the courts and judicial process (48%), and the prison system (54%) need to be completely rebuilt for Black people to be treated fairly. Smaller shares say the same about the political system (42%), the economic system (37%) and the health care system (34%), according to the October survey.

While Black Americans are in favor of significant changes to policing, most want spending on police departments in their communities to stay the same (39%) or increase (35%). A little more than one-in-five (23%) think spending on police departments in their area should be decreased.

Black adults who favor decreases in police spending are most likely to name medical, mental health and social services (40%) as the top priority for those reappropriated funds. Smaller shares say K-12 schools (25%), roads, water systems and other infrastructure (12%), and reducing taxes (13%) should be the top priority.

Voting and ‘buying Black’ viewed as important strategies for Black community advancement

Black Americans also have clear views on the types of political and civic engagement they believe will move Black communities forward. About six-in-ten Black adults say voting (63%) and supporting Black businesses or “buying Black” (58%) are extremely or very effective strategies for moving Black people toward equality in the U.S. Smaller though still significant shares say the same about volunteering with organizations dedicated to Black equality (48%), protesting (42%) and contacting elected officials (40%).

Black adults were also asked about the effectiveness of Black economic and political independence in moving them toward equality. About four-in-ten (39%) say Black ownership of all businesses in Black neighborhoods would be an extremely or very effective strategy for moving toward racial equality, while roughly three-in-ten (31%) say the same about establishing a national Black political party. And about a quarter of Black adults (27%) say having Black neighborhoods governed entirely by Black elected officials would be extremely or very effective in moving Black people toward equality.

Most Black Americans support repayment for slavery

Discussions about atonement for slavery predate the founding of the United States. As early as 1672 , Quaker abolitionists advocated for enslaved people to be paid for their labor once they were free. And in recent years, some U.S. cities and institutions have implemented reparations policies to do just that.

Most Black Americans say the legacy of slavery affects the position of Black people in the U.S. either a great deal (55%) or a fair amount (30%), according to the survey. And roughly three-quarters (77%) say descendants of people enslaved in the U.S. should be repaid in some way.

Black adults who say descendants of the enslaved should be repaid support doing so in different ways. About eight-in-ten say repayment in the forms of educational scholarships (80%), financial assistance for starting or improving a business (77%), and financial assistance for buying or remodeling a home (76%) would be extremely or very helpful. A slightly smaller share (69%) say cash payments would be extremely or very helpful forms of repayment for the descendants of enslaved people.

Where the responsibility for repayment lies is also clear for Black Americans. Among those who say the descendants of enslaved people should be repaid, 81% say the U.S. federal government should have all or most of the responsibility for repayment. About three-quarters (76%) say businesses and banks that profited from slavery should bear all or most of the responsibility for repayment. And roughly six-in-ten say the same about colleges and universities that benefited from slavery (63%) and descendants of families who engaged in the slave trade (60%).

Black Americans are skeptical change will happen

Even though Black Americans’ visions for social change are clear, very few expect them to be implemented. Overall, 44% of Black adults say equality for Black people in the U.S. is a little or not at all likely. A little over a third (38%) say it is somewhat likely and only 13% say it is extremely or very likely.

They also do not think specific institutions will change. Two-thirds of Black adults say changes to the prison system (67%) and the courts and judicial process (65%) that would ensure fair treatment for Black people are a little or not at all likely in their lifetime. About six-in-ten (58%) say the same about policing. Only about one-in-ten say changes to policing (13%), the courts and judicial process (12%), and the prison system (11%) are extremely or very likely.

This pessimism is not only about the criminal justice system. The majority of Black adults say the political (63%), economic (62%) and health care (51%) systems are also unlikely to change in their lifetime.

Black Americans’ vision for social change includes reparations. However, much like their pessimism about institutional change, very few think they will see reparations in their lifetime. Among Black adults who say the descendants of people enslaved in the U.S. should be repaid, 82% say reparations for slavery are unlikely to occur in their lifetime. About one-in-ten (11%) say repayment is somewhat likely, while only 7% say repayment is extremely or very likely to happen in their lifetime.

Black Democrats, Republicans differ on assessments of inequality and visions for social change

Party affiliation is one key point of difference among Black Americans in their assessments of racial inequality and their visions for social change. Black Republicans and Republican leaners are more likely than Black Democrats and Democratic leaners to focus on the acts of individuals. For example, when summarizing the nature of racism against Black people in the U.S., the majority of Black Republicans (59%) say racist acts committed by individual people is a bigger problem for Black people than racism in our laws. Black Democrats (41%) are less likely to hold this view.

Black Republicans (45%) are also more likely than Black Democrats (21%) to say that Black people who cannot get ahead in the U.S. are mostly responsible for their own condition. And while similar shares of Black Republicans (79%) and Democrats (80%) say they experience racial discrimination on a regular basis, Republicans (64%) are more likely than Democrats (36%) to say that most Black people who want to get ahead can make it if they are willing to work hard.

On the other hand, Black Democrats are more likely than Black Republicans to focus on the impact that racial inequality has on Black Americans. Seven-in-ten Black Democrats (73%) say racial discrimination is the main reason many Black people cannot get ahead in the U.S, while about four-in-ten Black Republicans (44%) say the same. And Black Democrats are more likely than Black Republicans to say racism (67% vs. 46%) and police brutality (65% vs. 44%) are extremely big problems for Black people today.

Black Democrats are also more critical of U.S. institutions than Black Republicans are. For example, Black Democrats are more likely than Black Republicans to say the prison system (57% vs. 35%), policing (52% vs. 29%) and the courts and judicial process (50% vs. 35%) should be completely rebuilt for Black people to be treated fairly.

While the share of Black Democrats who want to see large-scale changes to the criminal justice system exceeds that of Black Republicans, they share similar views on police funding. Four-in-ten each of Black Democrats and Black Republicans say funding for police departments in their communities should remain the same, while around a third of each partisan coalition (36% and 37%, respectively) says funding should increase. Only about one-in-four Black Democrats (24%) and one-in-five Black Republicans (21%) say funding for police departments in their communities should decrease.

Among the survey’s other findings:

Black adults differ by age in their views on political strategies. Black adults ages 65 and older (77%) are most likely to say voting is an extremely or very effective strategy for moving Black people toward equality. They are significantly more likely than Black adults ages 18 to 29 (48%) and 30 to 49 (60%) to say this. Black adults 65 and older (48%) are also more likely than those ages 30 to 49 (38%) and 50 to 64 (42%) to say protesting is an extremely or very effective strategy. Roughly four-in-ten Black adults ages 18 to 29 say this (44%).

Gender plays a role in how Black adults view policing. Though majorities of Black women (65%) and men (56%) say police brutality is an extremely big problem for Black people living in the U.S. today, Black women are more likely than Black men to hold this view. When it comes to criminal justice, Black women (56%) and men (51%) are about equally likely to share the view that the prison system should be completely rebuilt to ensure fair treatment of Black people. However, Black women (52%) are slightly more likely than Black men (45%) to say this about policing. On the matter of police funding, Black women (39%) are slightly more likely than Black men (31%) to say police funding in their communities should be increased. On the other hand, Black men are more likely than Black women to prefer that funding stay the same (44% vs. 36%). Smaller shares of both Black men (23%) and women (22%) would like to see police funding decreased.

Income impacts Black adults’ views on reparations. Roughly eight-in-ten Black adults with lower (78%), middle (77%) and upper incomes (79%) say the descendants of people enslaved in the U.S. should receive reparations. Among those who support reparations, Black adults with upper and middle incomes (both 84%) are more likely than those with lower incomes (75%) to say educational scholarships would be an extremely or very helpful form of repayment. However, of those who support reparations, Black adults with lower (72%) and middle incomes (68%) are more likely than those with higher incomes (57%) to say cash payments would be an extremely or very helpful form of repayment for slavery.

• Black adults in the September 2020 survey only include those who say their race is Black alone and are non-Hispanic. The same is true only for the questions of improvements to Black people’s lives and equality in the United States in the October 2021 survey. Throughout the rest of this report, Black adults include those who say their race is Black alone and non-Hispanic; those who say their race is Black and at least one other race and non-Hispanic; or Black and Hispanic, unless otherwise noted. ↩

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