Patient and public involvement

From WikiProjectMed
Jump to navigation Jump to search

Public involvement (or public and patient involvement, PPI) in medical research refers to the practice where people with health conditions (patients), carers and members of the public work together with researchers and influence what is researched and how. Involvement is not the same as participation which means taking part in research, for example taking a drug in a clinical trial.[1]

Definition

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. Through PPI 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

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][6]

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".[7] The NIHR's terminology differentiates involvement from participation where people take part in a research study and engagement which is sharing information and knowledge about research with the public.[5]

Benefits and impact

There are a variety reasons and benefits why researchers involve the public in research.[8] 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 can 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.[8][9]

Involving the public in research is considered a way of serving broader democratic principles because people affected by research have the right to have a say in it.[8][10] This also makes research more transparent and accountable for society.[8][11] Public involvement can also make research more ethical. For example public members can help participants of a clinical trial understand what the research is about so they can make informed consent have an overall better experience.[12]

Public members and patients have a range of reasons why they decide to get involved in research.[8] These can include altruistic motivations, such as wanting to make a difference by contributing to a better healthcare or helping others with a shared condition get better care and treatments.[8][9] Reasons for involvement can also stem from interest in a health topic or in research in general.[9] It can also be a form of volunteering, working to ensure the representation of a community or a way to gain new skills.[8]

Despite PPI becoming a more widely accepted part of the research process, the term PPI is sometimes perceived to be vague as a concept[13] and there are questions around what counts as good public involvement.[14] 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.[14] The six UK Standards for Public Involvement are summarised as:

  • inclusive opportunities,
  • working together,
  • support and learning,
  • governance,
  • communications,
  • impact.[15]

Further tools for supporting meaningful patient involvement include the Patient Engagement Quality Guidance developed by the global coalition Patient Focused Medicines Development. The document lists seven quality criteria including shared purpose, respect and accessibility, transparency, and sustainability.[16][17]

Types of involvement

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:[8]

  • 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:[8][18]

  • 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.[19]

Public involvement can be short-term and task-based or long-term across a research project or an institutional programme.[9]

Barriers and issues

There are a wide range of challenges and issues that can block the involvement of patients or hinder the process from being effective.[9]

Systematic issues can include a lack of adequate funding for implementing PPI.[9][20]

From the perspective of public members, many individual factors can influence if they can be involved in a meaningful way. Potential difficulties for patients might arise from health status, accessibility of locations, self-confidence, language proficiency and available free time.[20] Issues might include public members not feeling that their contributions matter or that they gain anything by being involved. A vague definition of the role and uncertainty about the goal can also be a barrier for public members.[20]

Health professionals' lack of knowledge and understanding of public involvement theory and techniques can also be a barrier to public involvement.[20] Involving patients simply as tokens or being dismissive about their contributions can lead to ineffective PPI and a negative impact on those involved.[9] Power imbalances between people, hierarchical or elitist attitudes by medical professionals can also impair the experience and quality of patient involvement.[20]

Reporting

Despite evidence that public involvement can have a positive influence on health research, evaluation of its impact has been reported to be anecdotal and weak.[21] This has led to the creation of multiple measuring tools to assess the impact of public involvement in research.[22] Examples include:

  • GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research[23]
  • Public Involvement in Research Impact Toolkit (PIRIT)[24]
  • Public Involvement Impact Assessment Framework (PiiAF)[25]
  • The 'cube' framework[26]

Around the world

International initiatives

The International Patient and Public Involvement (PPI) Network was established in 2017. It brings together organisations and individuals from across the globe with the aim to share expertise and evidence-based good practice.[27]

European Union

In 2012 the Innovative Medicines Initiative launched the European Patients’ Academy on Therapeutic Innovation (EUPATI) which provides education for patients to enable them to meaningfully contribute to medical research and medicine development. Besides its international activity, EUPATI also has national platforms in more than 20 countries.[28] EUPATI's publications include guidance documents on patient involvement in medical product regulation, ethical reviews of trials, research and development, and health technology assessment.[29]

United Kingdom

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.[20]

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.[30] The NIHR requires public involvement to be included in its funding programmes.[31] They produce various resources such as the Learning for Involvement website which hosts training materials and best practices to support researchers with public involvement.[32] 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.[33]

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.[34]

Canada

Main article: Patient engagement in Canada

In Canada the term patient engagement is used by the Canadian Institutes of Health Research (CIHR). Their Strategy for Patient-Oriented Research (SPOR) sets out the framework for patient engagement, stating that patients need to be involved in all aspects of research. SPOR is also the name of the scheme that provides funding for patient-oriented research.[35][36] The Canadian Cancer Society, a non-profit cancer research funder also developed a patient engagement strategy and involves patient partners in research funding decisions.[37][38]

United States

In the US, the Patient-Centered Outcomes Research Institute (PCORI) engages patients and funds research based on matters relevant to them.[39] The Clinical Trials Transformation Initiative (CTTI), a partnership between the Food and Drug Administration, the National Institutes of Health, and others, also runs a project exploring the best practices for patient engagement and incorporating patient perspectives in clinical trials.[40]

Global health

In global health research the equivalent of PPI is called community engagement and involvement (CEI) or community and public engagement (CPE). Similarly to PPI, community engagement is the practice of actively involving local communities in the countries where the research takes place. Global health research often takes place in low and middle income countries (LMICs) and concerns marginalised communities. Involving these groups in research can reduce the potential for exploitation, address ethical concerns and bridge cultural differences.[41][42]

Diversity and inclusion

In order for research to be relevant for all, the PPI process needs to include members of the public from diverse and inclusive groups.[43]

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.[44] 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.[45]

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.[46]

Frameworks for diversity

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).[47][48]

Similar frameworks exist for research participants, for example, the INCLUDE ethnicity framework[49] and the National Health Service (NHS) guidance for increasing diversity in research participation.[50]

History

The development of patient and public involvement in research was influenced by grassroots social movements, national politics and wider societal contexts.[51]

Emancipatory disability research in the UK in the 1970s can be seen as a forerunner of PPI. This research model was initiated by people with disabilities who were dissatisfied with their treatment and discrimination in society. They were also suspicious of conventional research for serving service providers instead of patients. The model proposed by the movement sought to equilise relationship between researchers and disabled people and make them empowered participants instead of research subjects.[51]

Another early drive for PPI came during the HIV pandemic in the 1980s. HIV activists lobbied for faster regulatory processes in public health that would serve the interests of patients. As a result to HIV activists work, the US Food and Drug Administration (FDA) started a working with patients in 1988.[28][52] In the 1990s HIV activism also influenced the European Medicines Agency (EMA) to start involving patients in its decision-making.[28]

In 1996 the UK's National Institute for Health Research (NIHR) established the advisory body INVOLVE to support public involvement in the NHS and health and care research.[53] INVOLVE produced a large library of guides, training materials and other resources relating to PPI.[51] NIHR set up the Centre for Engagement and Dissemination in 2020 as a successor of INVOLVE.[54] The UK government also set out their direction for public involvement in research in the 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.'[55]

In 2022, a large number of funders, regulators and research organisations in the United Kingdom 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.[56][57][58]

References

  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 January 3, 2024.
  2. ^ "UK Standards for Public Involvement - Definitions". sites.google.com. Retrieved January 9, 2024.
  3. ^ "Public involvement". Health Research Authority. Retrieved January 8, 2024.
  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 (March 9, 2023). "Patient and public involvement in research: a review of practical resources for young investigators". BMC Rheumatology. 7 (1): 2. doi:10.1186/s41927-023-00327-w. ISSN 2520-1026. PMC 9996937. PMID 36895053.
  5. ^ a b "About Public Involvement". People in Research. Retrieved January 3, 2024.
  6. ^ Gallivan, Jennifer; Kovacs Burns, Katharina; Bellows, Mandy; Eigenseher, Carol (December 26, 2012). "The Many Faces of Patient Engagement". Journal for Participatory Medicine. 4 (32).
  7. ^ "Public Partnerships". NIHR Public Health Interventions Research Studies Teams (PHIRST). Retrieved January 3, 2024.
  8. ^ a b c d e f g h i "Briefing notes for researchers - public involvement in NHS, health and social care research". National Institute for Health and Care Research. Retrieved January 3, 2024.
  9. ^ a b c d e f g Ball, Sarah; Harshfield, Amelia; Carpenter, Asha; Bertscher, Adam; Marjanovic, Sonja (2019). Patient and public involvement in research: Enabling meaningful contributions. RAND Corporation. doi:10.7249/rr2678. S2CID 198003937.
  10. ^ Modigh, Anton; Sampaio, Filipa; Moberg, Linda; Fredriksson, Mio (September 3, 2021). "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. PMID 34376328.
  11. ^ McCoy, Matthew S.; Warsh, Jonathan; Rand, Leah; Parker, Michael; Sheehan, Mark (April 8, 2019). "Patient and public involvement: Two sides of the same coin or different coins altogether?". Bioethics. 33 (6): 708–715. doi:10.1111/bioe.12584. ISSN 0269-9702. PMC 7116097. PMID 30957902.
  12. ^ "Impact of public involvement on the ethical aspects of research" (PDF). HRA / INVOLVE. 2016. Retrieved January 3, 2024.
  13. ^ Madden, Mary; Speed, Ewen (June 2, 2017). "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.
  14. ^ 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 (September 16, 2020). "'All hands-on deck', working together to develop UK standards for public involvement in research". Research Involvement and Engagement. 6 (1): 53. doi:10.1186/s40900-020-00229-y. ISSN 2056-7529. PMC 7493420. PMID 32974049.
  15. ^ "UK Standards for Public Involvement". UK Standards for Public Involvement. Retrieved January 3, 2024.
  16. ^ Feldman, David; Kruger, Paola; Delbecque, Laure; Duenas, Ashley; Bernard-Poenaru, Oana; Wollenschneider, Séverine; Hicks, Nick; Reed, Janine Ann; Sargeant, Ify; Pakarinen, Chi; Hamoir, Anne-Marie; on behalf of Patient Focused Medicines Development Working Groups 1; Bernard-Poenaru, Oana; Deane, Katherine; Feldman, David (December 2021). "Co-creation of practical "how-to guides" for patient engagement in key phases of medicines development—from theory to implementation". Research Involvement and Engagement. 7 (1): 57. doi:10.1186/s40900-021-00294-x. ISSN 2056-7529. PMC 8383358. PMID 34425911.{{cite journal}}: CS1 maint: numeric names: authors list (link)
  17. ^ "Patient Engagement Quality Guidance" (PDF). Patient Focused Medicines Development. May 15, 2018. Retrieved February 28, 2024.
  18. ^ "Patient involvement toolkit for researchers". Cancer Research UK. June 27, 2018. Retrieved January 12, 2024.
  19. ^ "Call for research funding committee members". Cancer Research UK. May 23, 2016. Retrieved January 3, 2024.
  20. ^ a b c d e f Ocloo, Josephine; Garfield, Sara; Franklin, Bryony Dean; Dawson, Shoba (December 2021). "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 (8): 8. doi:10.1186/s12961-020-00644-3. ISSN 1478-4505. PMC 7816359. PMID 33472647.
  21. ^ Staley, Kristina (July 31, 2015). "'Is it worth doing?' Measuring the impact of patient and public involvement in research". Research Involvement and Engagement. 1 (1): 6. doi:10.1186/s40900-015-0008-5. ISSN 2056-7529. PMC 5598089. PMID 29062495.
  22. ^ Russell, Jill; Fudge, Nina; Greenhalgh, Trish (October 27, 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): 63. doi:10.1186/s40900-020-00239-w. ISSN 2056-7529. PMC 7592364. PMID 33133636.
  23. ^ 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 (August 2, 2017). "GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research". BMJ. 358: j3453. doi:10.1136/bmj.j3453. ISSN 0959-8138. PMC 5539518. PMID 28768629.
  24. ^ "Public Involvement in Research Impact Toolkit (PIRIT)". Cardiff University. Retrieved January 3, 2024.
  25. ^ "Public Involvement Impact Assessment Framework (PiiAF)". PiiAF website. Retrieved January 3, 2024.
  26. ^ Kok, Michele (May 2018). Guidance document: evaluating public involvement in research. University of the West of England. ISBN 9781860435430 – via UWE Bristol e-Prints Repository.
  27. ^ "International PPI Network | patient and public involvement". IPPIN. Retrieved January 3, 2024.
  28. ^ a b c Haerry, David; Brooke, Nicholas; Dutarte, Maria; Geissler, Jan (October 28, 2021). Bertelsen, Neil; Guilleret, Isabelle; Froissart, Marc (eds.). "The evolving practice of patient and public involvement in Europe and the United States". Regulatory Affairs Watch. 3 (6): 8–13. doi:10.54920/SCTO.2021.RAWatch.6.8. ISSN 2813-2548.
  29. ^ "What is Meaningful Patient Engagement?". EUPATI Toolbox. Retrieved February 28, 2024.
  30. ^ 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 (August 2023). "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. PMID 37474660.
  31. ^ De Simoni, Anna; Jackson, Tracy; Inglis Humphrey, Wendy; Preston, Jennifer; Mah, Heather; Wood, Helen E.; Kinley, Emma; Gonzalez Rienda, Laura; Porteous, Carol (March 25, 2023). "Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications". Research Involvement and Engagement. 9 (1): 16. doi:10.1186/s40900-023-00424-7. ISSN 2056-7529. PMC 10040101. PMID 36966346.
  32. ^ "About us". Learning for Involvement. Retrieved January 25, 2024.
  33. ^ Hart, Ailsa L.; Lomer, Miranda; Verjee, Azmina; Kemp, Karen; Faiz, Omar; Daly, Ann; Solomon, Julie; McLaughlin, John (February 2017). "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.
  34. ^ "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 January 3, 2024.
  35. ^ "About SPOR". Canadian Institutes of Health Research. June 18, 2018. Retrieved February 28, 2024.
  36. ^ "Strategy for Patient-Oriented Research - Patient Engagement Framework". Canadian Institutes of Health Research. July 2, 2014. Retrieved February 28, 2024.
  37. ^ Taccone, Michael S.; Baudais, Nathalie; Wood, Don; Bays, Suzanne; Frost, Sasha; Urquhart, Robin; Graham, Ian D.; Takacs, Judit (September 29, 2023). "Co-creation of a patient engagement strategy in cancer research funding". Research Involvement and Engagement. 9 (1): 86. doi:10.1186/s40900-023-00501-x. ISSN 2056-7529. PMC 10542220. PMID 37775825.
  38. ^ cancer. "What is patient engagement in research funding". Canadian Cancer Society. Retrieved February 28, 2024.
  39. ^ Frank, Lori; Basch, Ethan; Selby, Joe V. (October 15, 2014). "The PCORI Perspective on Patient-Centered Outcomes Research". JAMA. 312 (15): 1513–1514. doi:10.1001/jama.2014.11100. ISSN 0098-7484. PMID 25167382.
  40. ^ Bloom, Diane; Beetsch, Joel; Harker, Matthew; Hesterlee, Sharon; Moreira, Paulo; Patrick-Lake, Bray; Selig, Wendy; Sherman, Jeffrey; Smith, Sophia K.; Valentine, James E.; Roberts, Jamie N. (July 23, 2017). "The Rules of Engagement: CTTI Recommendations for Successful Collaborations Between Sponsors and Patient Groups Around Clinical Trials". Therapeutic Innovation & Regulatory Science. 52 (2): 206–213. doi:10.1177/2168479017720247. ISSN 2168-4790. PMC 5846850. PMID 29714514.
  41. ^ Hickey, Gary; Porter, Katie; Tembo, Doreen; Rennard, Una; Tholanah, Martha; Beresford, Peter; Chandler, David; Chimbari, Moses; Coldham, Tina; Dikomitis, Lisa; Dziro, Biggy; Ekiikina, Peter O.; Khattak, Maria I.; Montenegro, Cristian R.; Mumba, Noni (January 27, 2022). "What Does "Good" Community and Public Engagement Look Like? Developing Relationships With Community Members in Global Health Research". Frontiers in Public Health. 9. doi:10.3389/fpubh.2021.776940. ISSN 2296-2565. PMC 8830293. PMID 35155342.
  42. ^ Kroese, Karolin; Porter, Katie; Surridge, Heidi; Tembo, Doreen (October 27, 2021). "Challenges and solutions: surveying researchers on what type of community engagement and involvement activities are feasible in low and middle income countries during the COVID-19 pandemic". BMJ Open. 11 (10): e052135. doi:10.1136/bmjopen-2021-052135. ISSN 2044-6055. PMC 8551745. PMID 34706957.
  43. ^ Islam, Safina; Joseph, Olivia; Chaudry, Atiha; Forde, Davine; Keane, Annie; Wilson, Cassie; Begum, Nasima; Parsons, Suzanne; Grey, Tracy; Holmes, Leah; Starling, Bella (December 2021). ""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): 46. doi:10.1186/s40900-021-00292-z. ISSN 2056-7529. PMC 8234650. PMID 34174961.
  44. ^ "NIHR Public Involvement Feedback Survey 2020-2021: The results". www.nihr.ac.uk. Retrieved January 9, 2024.
  45. ^ "Survey finds strong public support for health research". Health Research Authority. Retrieved January 9, 2024.
  46. ^ Dawson, Shoba; Campbell, Stephen M.; Giles, Sally J.; Morris, Rebecca L.; Cheraghi-Sohi, Sudeh (February 2018). "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.
  47. ^ "NIHR Race Equality Framework". www.nihr.ac.uk. Retrieved January 9, 2024.
  48. ^ "Race equality in public involvement | NIHR". www.nihr.ac.uk. Retrieved January 9, 2024.
  49. ^ "The INCLUDE Ethnicity Framework". Trial Forge. Retrieved January 9, 2024.
  50. ^ "NHS Accelerated Access Collaborative » Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups". www.england.nhs.uk. Retrieved January 9, 2024.
  51. ^ a b c beresford, peter; russo, jasna (August 6, 2020), Nolte, Ellen; Merkur, Sherry; Anell, Anders (eds.), "Patient and public involvement in research", Achieving Person-Centred Health Systems (1 ed.), Cambridge University Press, pp. 145–172, doi:10.1017/9781108855464.009, ISBN 978-1-108-85546-4, S2CID 225498451, retrieved February 2, 2024
  52. ^ Neus, Nora (October 11, 2023). "'The start of the national Aids movement': Act Up's defining moment in queer protest history". The Guardian. ISSN 0261-3077. Retrieved February 2, 2024.
  53. ^ Green, Gill (August 17, 2016). "Power to the people: To what extent has public involvement in applied health research achieved this?". Research Involvement and Engagement. 2 (1): 28. doi:10.1186/s40900-016-0042-y. ISSN 2056-7529. PMC 5831888. PMID 29507763.
  54. ^ McKee, Selina (April 2, 2020). "NIHR launches new Centre for Engagement and Dissemination - PharmaTimes". pharmatimes.com. Retrieved January 3, 2024.
  55. ^ "Best research for best health: a new national health research strategy". GOV.UK. Research and Development Directorate, Department of Health. January 25, 2006. Retrieved January 3, 2024.
  56. ^ "Cochrane joins public involvement pledge". Cochrane. Retrieved January 3, 2024.
  57. ^ "Putting people first - embedding public involvement in health and social care research". Health Research Authority. Retrieved January 3, 2024.
  58. ^ "Shared commitment to public involvement". National Institute of Health and Care Research. Retrieved January 3, 2024.

External links

Retrieved from "https://mdwiki.org/wiki/Patient_and_public_involvement"