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Public involvement in health and care research

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Public involvement (or public and patient involvement, PPI) in the context of health and care research, means an active partnership between people with medical conditions (patients), carers and members of the public with researchers that influences and shapes research. Involvement is not the same as taking part in research, for example taking a drug in a clinical trial.[1]

Definition

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Several organisations in the United Kingdom use the definition of public involvement in research as research being carried out “with” or “by” members of the public rather than “to”, “about” or “for” them. It is the way in which patients, carers and people with lived experience work alongside researchers to influence and contribute to how research is designed and conducted. Members of the public involved in research are frequently referred to as public members or public contributors.[2][3][4]

Terminology

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Researchers and others use different terms to describe how they interact with the public, and this can vary across organisations and countries. The terms involvement, engagement and participation are sometimes used interchangeably.[5]

This is different from participation where people take part in a research study and engagement which is sharing information and knowledge about research with the public.

The National Institute for Health and Care Research (NIHR) uses the term public partnerships to encompass the components of involvement, engagement and participation. It can be summarised as "a term to collectively describe ways in which patients, service users, carers and members of the public work with researchers, and health and care professionals, in the creation and use of health and care research".[6]

Benefits and impact

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There are a variety reasons and benefits why researchers involve the public in research.[7] Besides the added value it is also often a requirement for receiving funding for research.[1]

Involving members of the public can improve the quality of research and make it more relevant and accessible. People with current or past experience of illness can provide a different perspective than professionals and compliment their knowledge. Through their personal knowledge they identify research topics that are relevant and important to those living with an illness or using a service. They can also help to make the research more grounded in the needs of the specific communities they are part of. Public contributors can also ensure that the research is presented in plain language that is clear to the wider society and the specific groups it is most relevant for.[7]

Involving the public in research is also a way of serving broader democratic principles as people affected by research have the right to have a say in it.[7][8] This also makes research more transparent and accountable for society.[7] Public involvement can also make research more ethical, for example, by helping participants in understanding what the research is about so they can make informed consent have an overall better experience during a clinical trial.[9]

Non-professionals also have a range of reasons why they decide to get involved in research. These can include wanting to make a difference, helping others with the same conditions by improving the quality of care and treatments or thinking that their experience can improve the directions of research. It can also be a form of volunteering, ensuring the representation of a community or a way to gain new skills.[7]

Despite PPI becoming a more widely accepted part of the research process, the term PPI might be perceived vague as a concept[10] and there are questions around what counts as good public involvement.[11] One of the initiatives aiming to improve the quality and consistency of public involvement in research is the UK Standards for Public Involvement. These were developed through a collaboration of organisations, researchers and practitioners, research funders and public partners across the United Kingdom. The standards provide a description of what good public involvement looks like and can be used as a tool to help people and organisations improve their PPI.[11] The six UK Standards for Public Involvement are summarised as:

  • Inclusive opportunities
  • Working together
  • Support and learning
  • Governance
  • Communications
  • Impact[12]

Barriers and issues

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Health professionals' knowledge and understanding of public involvement theory and techniques has been found to be a barrier to public involvement.[13]

Types of involvement

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There are different approaches to involving the public in research which correspond to different levels of influence that public members have in a research project:[7]

  • Consultation. Asking members of the public for their views about a specific part of research and using these to make decisions.
  • Collaboration. An ongoing partnership between researchers and the involved members of the public. Decisions about the research are shared.
  • Co-production. Working together from the start to the end of the research project. Co-production requires efforts to make sure that participants share power and responsibility.
  • User controlled research. Research that is actively directed and managed by service users and their organisations. They make decisions about the issues and questions looked at by the research.

There are wide range of ways how the public can be involved in different stages of research. These include:[7][14]

  • Identifying and prioritising research. People with lived experience help to identify the right topics to ensure that the research is looking at what matters to them.
  • Commissioning research. Involving members of the public in deciding which research proposals should get funding. Public members can also continue monitoring the research projects that get funded.
  • Designing research. Public members help designing the research to make sure it is feasible, ethical and relevant. This happens usually before applying for funding.
  • Managing research. Public involvement in the steering group or managing committee that oversees the research.
  • Undertaking research. Members of the public help carrying out the research. This can include, for example, gathering evidence, reviewing literature, conducting interviews and focus groups, and analysing the results.
  • Disseminating (sharing) research. Public members help sharing the findings of research. They can be consulted on the ways of dissemination, help summarising the research in plain language, work on accessibility issues.
  • Implementing research. Public members influencing how the result is taken into practice and making sure it leads to action.[15]

Reporting

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Despite evidence that public involvement can have benefits on health research, evaluation of the impact of public involvement has been reported to be anecdotal and weak.[16] This has led to the creation of multiple measuring tools to assess the impact of public involvement in research.[17] Examples include:

  • GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research[18]
  • Public Involvement in Research Impact Toolkit (PIRIT)[19]
  • Public Involvement Impact Assessment Framework (PiiAF)[20]
  • The ‘cube’ framework[21]

Global health

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Public involvement in health research is apparent in countries across the globe. Although it has been found that in high income countries, it is commonly called “patient and public involvement,” “engagement,” or “participation”. Whereas in low and middle income countries these participatory processes are termed “community engagement,” “participation,” and “community engagement and involvement.”[22]

PPI around the world

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International initiatives

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The International Patient and Public Involvement (PPI) Network was established in 2017. It brings together organisations and individuals from across the globe to join together and share expertise and evidence-based good practice. Through collaboration, the International PPI Network aims to be empowered to influence international and regional health and social care research organisations. The network organises a webinar series and network meetings. [23]

United Kingdom

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In the UK, patient and public involvement is acknowledged in key pieces of legislation on healthcare such as the Health and Social Care Act and the NHS Constitution.[13]

The National Institute for Health and Care Research (NIHR), a research funder in England, is considered a pioneer in the development and implementation of PPI.[24] The NIHR requires public involvement to be included in its funding programmes.[25] They produce various resources such as the Learning for Involvement website which hosts training materials and best practices to support researchers with public involvement.[26] The NIHR also funds the James Lind Alliance, an organisation that brings together patients, carers and clinicians to identify unanswered questions or uncertainties for future research to look at.[27]

The Shared Learning Group on Involvement aims to encourage shared learning about the involvement of people with lived experience (also called service users, patients, carers and other terms) between charities working in the UK.[28]

United States

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In the US, the Patient-Centered Outcomes Research Institute (PCORI) engages patients and funds research based on matters relevant to them.[29]

Diversity and inclusion in PPI

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In order for research to be relevant for all, the PPI process needs to include members of the public from diverse and inclusive groups.[30]

A 2021 survey highlights that the majority of public contributors to NIHR research were predominantly female (57%), 61 years of age and over, white and heterosexual.[31] The Health Research Authority found that people from ethnic and lower socioeconomic groups felt less confident about being treated in a dignified and respectful way in research in comparison to white and higher socioeconomic individuals.[32]

Black and minority ethnic (BME) involvement in research has widespread support, however it tends to be limited to certain phases of the research cycle and particular ethnicities.[33]

Frameworks for diversity in PPI

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The Race Equality Framework (REF) was produced as a self assessment tool aiming to help organisations improve racial equity in health and care research. It was co-produced by the Race Equality Public Action Group (REPAG).[34][35]

Similar frameworks exist for research participants, for example, the INCLUDE ethnicity framework[36] and the National Health Service (NHS) guidance for increasing diversity in research participation.[37]

History

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In the United Kingdom, the direction for public involvement in research was set out in the government's 2006 health research strategy, Best Research for Best Health. It stated: ’Patients and the public must be involved in all stages of the research process: priority setting; defining research outcomes; selecting research methodology;  patient recruitment; interpretation of findings and dissemination of results.'[38]

Until 2019, a national advisory body for the NIHR called ‘'INVOLVE' brought together expertise, insight and experience on public involvement in NHS, public health and social care research.[39] NIHR set up the Centre for Engagement and Dissemination in 2020 as a successor of INVOLVE.[40]

In 2022, a large number of funders, regulators and research organisations signed up to a shared commitment to improve public involvement in research across the sector and to enable it to be consistently excellent. The signatories of the Shared Commitment to Public Involvement agreed to:

  • listen to and learn from the people and communities we involve and apply and share that learning
  • build and share the evidence of how to involve the public and the impact this has
  • support improvements in equality, diversity, and inclusion in public involvement
  • promote the UK Standards for Public Involvement[41][42][43]

References

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  1. ^ a b "Public Information Pack (PIP): How to get involved in NHS, public health and social care research". National Institute for Health and Care Research. Retrieved 2024-01-03.
  2. ^ "UK Standards for Public Involvement - Definitions". sites.google.com. Retrieved 2024-01-09.
  3. ^ "Public involvement". Health Research Authority. Retrieved 2024-01-08.
  4. ^ Arumugam, Ashokan; Phillips, Lawrence Rick; Moore, Ann; Kumaran, Senthil D.; Sampath, Kesava Kovanur; Migliorini, Filippo; Maffulli, Nicola; Ranganadhababu, Bathri Narayanan; Hegazy, Fatma; Botto-van Bemden, Angie (2023-03-09). "Patient and public involvement in research: a review of practical resources for young investigators". BMC Rheumatology. 7 (1). doi:10.1186/s41927-023-00327-w. ISSN 2520-1026. PMC 9996937. PMID 36895053.{{cite journal}}: CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  5. ^ "About Public Involvement". People in Research. Retrieved 2024-01-03.
  6. ^ "Public Partnerships". NIHR Public Health Interventions Research Studies Teams (PHIRST). Retrieved 2024-01-03.
  7. ^ a b c d e f g "Briefing notes for researchers - public involvement in NHS, health and social care research". National Institute for Health and Care Research. Retrieved 2024-01-03.
  8. ^ Modigh, Anton; Sampaio, Filipa; Moberg, Linda; Fredriksson, Mio (2021-09-03). "The impact of patient and public involvement in health research versus healthcare: A scoping review of reviews". Health Policy. 125 (9): 1208–1221. doi:10.1016/j.healthpol.2021.07.008.
  9. ^ "Impact of public involvement on the ethical aspects of research" (PDF). HRA / INVOLVE. 2016. Retrieved 2024-01-03.
  10. ^ Madden, Mary; Speed, Ewen (2017-06-02). "Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context". Frontiers in Sociology. 2. doi:10.3389/fsoc.2017.00007. ISSN 2297-7775.{{cite journal}}: CS1 maint: unflagged free DOI (link)
  11. ^ a b Crowe, Sally; Adebajo, Ade; Esmael, Hothan; Denegri, Simon; Martin, Angela; McAlister, Bob; Moore, Barbara; Quinn, Martin; Rennard, Una; Simpson, Julie; Wray, Paula; Yeeles, Philippa (16 September 2020). "'All hands-on deck', working together to develop UK standards for public involvement in research". Research Involvement and Engagement. 6 (1). doi:10.1186/s40900-020-00229-y. ISSN 2056-7529. PMC 7493420. PMID 32974049.{{cite journal}}: CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  12. ^ "UK Standards for Public Involvement". UK Standards for Public Involvement. Retrieved 2024-01-03.
  13. ^ a b Ocloo, Josephine; Garfield, Sara; Franklin, Bryony Dean; Dawson, Shoba (2021-12). "Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews". Health Research Policy and Systems. 19 (1). doi:10.1186/s12961-020-00644-3. ISSN 1478-4505. PMC 7816359. PMID 33472647. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  14. ^ "Patient involvement toolkit for researchers". Cancer Research UK. 2018-06-27. Retrieved 2024-01-12.
  15. ^ "Call for research funding committee members". Cancer Research UK. 2016-05-23. Retrieved 2024-01-03.
  16. ^ Staley, Kristina (31 July 2015). "'Is it worth doing?' Measuring the impact of patient and public involvement in research". Research Involvement and Engagement. 1 (1). doi:10.1186/s40900-015-0008-5. ISSN 2056-7529. PMC 5598089. PMID 29062495.{{cite journal}}: CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  17. ^ Russell, Jill; Fudge, Nina; Greenhalgh, Trish (27 October 2020). "The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?". Research Involvement and Engagement. 6 (1). doi:10.1186/s40900-020-00239-w. ISSN 2056-7529. PMC 7592364. PMID 33133636.{{cite journal}}: CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  18. ^ Staniszewska, S; Brett, J; Simera, I; Seers, K; Mockford, C; Goodlad, S; Altman, D G; Moher, D; Barber, R; Denegri, S; Entwistle, A; Littlejohns, P; Morris, C; Suleman, R; Thomas, V (2017-08-02). "GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research". BMJ: j3453. doi:10.1136/bmj.j3453. ISSN 0959-8138. PMC 5539518. PMID 28768629.{{cite journal}}: CS1 maint: PMC format (link)
  19. ^ "Public Involvement in Research Impact Toolkit (PIRIT)". Cardiff University. Retrieved 2024-01-03.
  20. ^ "Public Involvement Impact Assessment Framework (PiiAF)". PiiAF website. Retrieved 2024-01-03.
  21. ^ Kok, Michele (May 2018). "Guidance document: evaluating public involvement in research". UWE Bristol e‐Prints Repository. ISBN 9781860435430.
  22. ^ Tembo, Doreen; Hickey, Gary; Montenegro, Cristian; Chandler, David; Nelson, Erica; Porter, Katie; Dikomitis, Lisa; Chambers, Mary; Chimbari, Moses; Mumba, Noni; Beresford, Peter; Ekiikina, Peter O; Musesengwa, Rosemary; Staniszewska, Sophie; Coldham, Tina (2021-02-15). "Effective engagement and involvement with community stakeholders in the co-production of global health research". BMJ: n178. doi:10.1136/bmj.n178. ISSN 1756-1833. PMC 7879275. PMID 33593805.{{cite journal}}: CS1 maint: PMC format (link)
  23. ^ "International PPI Network | patient and public involvement". IPPIN. Retrieved 2024-01-03.
  24. ^ Aiyegbusi, Olalekan Lee; McMullan, Christel; Hughes, Sarah E.; Turner, Grace M.; Subramanian, Anuradhaa; Hotham, Richard; Davies, Elin Haf; Frost, Chris; Alder, Yvonne; Agyen, Lisa; Buckland, Lewis; Camaradou, Jennifer; Chong, Amy; Jeyes, Felicity; Kumar, Sumita (2023-08). "Considerations for patient and public involvement and engagement in health research". Nature Medicine. 29 (8): 1922–1929. doi:10.1038/s41591-023-02445-x. ISSN 1078-8956. {{cite journal}}: Check date values in: |date= (help)
  25. ^ De Simoni, Anna; Jackson, Tracy; Inglis Humphrey, Wendy; Preston, Jennifer; Mah, Heather; Wood, Helen E.; Kinley, Emma; Gonzalez Rienda, Laura; Porteous, Carol (2023-03-25). "Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications". Research Involvement and Engagement. 9 (1). doi:10.1186/s40900-023-00424-7. ISSN 2056-7529. PMC 10040101. PMID 36966346.{{cite journal}}: CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  26. ^ "About us". Learning for Involvement. Retrieved 2024-01-25.
  27. ^ Hart, Ailsa L.; Lomer, Miranda; Verjee, Azmina; Kemp, Karen; Faiz, Omar; Daly, Ann; Solomon, Julie; McLaughlin, John (2017-02). "What Are the Top 10 Research Questions in the Treatment of Inflammatory Bowel Disease? A Priority Setting Partnership with the James Lind Alliance". Journal of Crohn's and Colitis. 11 (2): 204–211. doi:10.1093/ecco-jcc/jjw144. ISSN 1873-9946. PMC 5266081. PMID 27506537. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link)
  28. ^ "Shared Learning Group on Involvement – Encouraging shared learning about service user and carer involvement between voluntary sector organisations working in the UK". slginvolvement.org.uk. Retrieved 2024-01-03.
  29. ^ Frank, Lori; Basch, Ethan; Selby, Joe V. (2014-10-15). "The PCORI Perspective on Patient-Centered Outcomes Research". JAMA. 312 (15): 1513. doi:10.1001/jama.2014.11100. ISSN 0098-7484.
  30. ^ Islam, Safina; Joseph, Olivia; Chaudry, Atiha; Forde, Davine; Keane, Annie; Wilson, Cassie; Begum, Nasima; Parsons, Suzanne; Grey, Tracy; Holmes, Leah; Starling, Bella (2021-12). ""We are not hard to reach, but we may find it hard to trust" …. Involving and engaging 'seldom listened to' community voices in clinical translational health research: a social innovation approach". Research Involvement and Engagement. 7 (1). doi:10.1186/s40900-021-00292-z. ISSN 2056-7529. PMC 8234650. PMID 34174961. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  31. ^ "NIHR Public Involvement Feedback Survey 2020-2021: The results". www.nihr.ac.uk. Retrieved 2024-01-09.
  32. ^ "Survey finds strong public support for health research". Health Research Authority. Retrieved 2024-01-09.
  33. ^ Dawson, Shoba; Campbell, Stephen M.; Giles, Sally J.; Morris, Rebecca L.; Cheraghi‐Sohi, Sudeh (2018-02). "Black and minority ethnic group involvement in health and social care research: A systematic review". Health Expectations. 21 (1): 3–22. doi:10.1111/hex.12597. ISSN 1369-6513. PMC 5750731. PMID 28812330. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link)
  34. ^ "NIHR Race Equality Framework". www.nihr.ac.uk. Retrieved 2024-01-09.
  35. ^ "Race equality in public involvement | NIHR". www.nihr.ac.uk. Retrieved 2024-01-09.
  36. ^ "The INCLUDE Ethnicity Framework". Trial Forge. Retrieved 2024-01-09.
  37. ^ "NHS Accelerated Access Collaborative » Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups". www.england.nhs.uk. Retrieved 2024-01-09.
  38. ^ "Best research for best health: a new national health research strategy". GOV.UK. Research and Development Directorate, Department of Health. 25 January 2006. Retrieved 2024-01-03.
  39. ^ "INVOLVE supports public involvement in NHS, public health and social care research". 2011-04-12. Retrieved 2024-01-03.
  40. ^ McKee, Selina (2020-04-02). "NIHR launches new Centre for Engagement and Dissemination - PharmaTimes". pharmatimes.com. Retrieved 2024-01-03.
  41. ^ "Cochrane joins public involvement pledge". Cochrane. Retrieved 2024-01-03.
  42. ^ "Putting people first - embedding public involvement in health and social care research". Health Research Authority. Retrieved 2024-01-03.
  43. ^ "Shared commitment to public involvement". National Institute of Health and Care Research. Retrieved 2024-01-03.
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