A pesquisa em saúde e o uso da estratégia de Envolvimento de Pacientes e Público (EPP): Revisão de literatura
DOI:
https://doi.org/10.33448/rsd-v14i11.49973Palavras-chave:
Pesquisa em Saúde, Participação do Paciente, Participação da Comunidade.Resumo
O objetivo desta revisão foi analisar a produção científica sobre o uso da estratégia de Envolvimento de Pacientes e Público (Public and Patient Involvement, PPI) em pesquisas na área da saúde, considerando sua relevância ética e potencial de aprimoramento da qualidade dos estudos. Realizou-se uma pesquisa documental de fonte indireta em artigos de terceiros, num estudo de natureza qualitativa com pouca sistematização e, do tipo revisão narrativa da literatura. A busca foi realizada em dezembro de 2023 nas bases PubMed/MEDLINE, SciELO, Google Scholar e em páginas institucionais, utilizando descritores em português e inglês relacionados ao PPI e à pesquisa em saúde. Foram incluídos artigos originais, revisões, protocolos, diretrizes e documentos técnicos, sem restrição de data de publicação, e excluídos editoriais de opinião e textos não fundamentados. A seleção resultou em 55 documentos, sendo 40 artigos científicos e 15 relatórios ou diretrizes institucionais. Entre os achados, predominam revisões sistemáticas e de escopo que mapearam práticas de engajamento em diferentes contextos internacionais, além de estudos que demonstraram impactos positivos do PPI em processos de recrutamento, retenção e disseminação de resultados. Identificou-se ampla disponibilidade de guias e ferramentas de implementação em países como Reino Unido, Estados Unidos e Canadá, mas apenas uma experiência nacional foi encontrada, destacando a escassez de práticas consolidadas no Brasil. Conclui-se que o PPI tem potencial para ampliar a relevância social e ética das pesquisas em saúde no país, contribuindo para maior aplicabilidade dos resultados e fortalecimento da participação cidadã na produção de conhecimento científico.
Referências
Academia Brasileira de Letras. (2023). Vocabulário Ortográfico da Lingua Portuguesa. https://www.academia.org.br/nossa-lingua/vocabulario-ortografico
Arumugam, A., Phillips, L. R., Moore, A., Kumaran, S. D., Sampath, K. K., Migliorini, F., Maffulli, N., Ranganadhababu, B. N., Hegazy, F., & Botto-van Bemden, A. (2023). Patient and public involvement in research: a review of practical resources for young investigators. BMC Rheumatology, 7(1), 1–14. https://doi.org/10.1186/s41927-023-00327-w
Bensenor, I. M., Goulart, A. C., Thomas, G. N., & Lip, G. Y. H. (2022). Patient and Public Involvement and Engagement (PPIE): first steps in the process of the engagement in research projects in Brazil. Brazilian Journal of Medical and Biological Research, 55, 1–3. https://doi.org/10.1590/1414-431X2022e12369
Bishop, K.; Goller, R.; Guthrie, K. (2014). Community Engagement Framework. City of Guelph, 1–32.
Boaz, A., Hanney, S., Borst, R., O’Shea, A., & Kok, M. (2018). How to engage stakeholders in research: design principles to support improvement. Health Research Policy and Systems, 16(1), 60. https://doi.org/10.1186/s12961-018-0337-6
Boivin, A., Richards, T., Forsythe, L., Grégoire, A., L’Espérance, A., Abelson, J., & Carman, K. L. (2018). Evaluating patient and public involvement in research. BMJ (Online), 363(December), 16–17. https://doi.org/10.1136/bmj.k5147
Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities. Patient, 7(4), 387–395. https://doi.org/10.1007/s40271-014-0065-0
Brighton, L. J., Tunnard, I., Farquhar, M., Booth, S., Miller, S., Yi, D., Gao, W., Bajwah, S., Man, W. D. C., Reilly, C. C., Ogden, M., Bailey, S., Ewart, C., Higginson, I. J., & Maddocks, M. (2018). Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation. Chronic Respiratory Disease, 16. https://doi.org/10.1177/1479973118816448
Cambridge Dictionary. (2023). Stakeholder definition. https://dictionary.cambridge.org/us/dictionary/english-portuguese/stakeholder
Camden, C., Shikako-Thomas, K., Nguyen, T., Graham, E., Thomas, A., Sprung, J., Morris, C., & Russell, D. J. (2015). Engaging stakeholders in rehabilitation research: A scoping review of strategies used in partnerships and evaluation of impacts. Disability and Rehabilitation, 37(15), 1390–1400. https://doi.org/10.3109/09638288.2014.963705
Concannon, T. W., Meissner, P., Grunbaum, J. A., McElwee, N., Guise, J.-M., Santa, J., Conway, P. H., Daudelin, D., Morrato, E. H., & Leslie, L. K. (2012). A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research. Journal of General Internal Medicine, 27(8), 985–991. https://doi.org/10.1007/s11606-012-2037-1
Crocker, J. C., Boylan, A. M., Bostock, J., & Locock, L. (2017). Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expectations, 20(3), 519–528. https://doi.org/10.1111/hex.12479
Crocker, J. C., Ricci-Cabello, I., Parker, A., Hirst, J. A., Chant, A., Petit-Zeman, S., Evans, D., & Rees, S. (2018). Impact of patient and public involvement on enrolment and retention in clinical trials: Systematic review and meta-analysis. BMJ (Online), 363, 1–17. https://doi.org/10.1136/bmj.k4738
Daveson, B. A., De Wolf-Linder, S., Witt, J., Newson, K., Morris, C., Higginson, I. J., & Evans, C. J. (2015). Results of a transparent expert consultation on patient and public involvement in palliative care research. Palliative Medicine, 29(10), 939–949. https://doi.org/10.1177/0269216315584875
Deverka, P. A., Lavallee, D. C., Desai, P. J., Esmail, L. C., Ramsey, S. D., Veenstra, D. L., & Tunis, S. R. (2012). Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement. Journal of Comparative Effectiveness Research, 1(2), 181–194. https://doi.org/10.2217/cer.12.7
Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P., Eton, D., Sloan, J., Montori, V., Asi, N., Dabrh, A. M. A., & Murad, M. H. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14, 1–9. https://doi.org/10.1186/1472-6963-14-89
Gamble, C., Dudley, L., Allam, A., Bell, P., Buck, D., Goodare, H., Hanley, B., Preston, J., Walker, A., Williamson, P. R., & Young, B. (2015). An evidence base to optimise methods for involving patient and public contributors in clinical trials: a mixed-methods study. Health Services and Delivery Research, 3(39), 1–142. https://doi.org/10.3310/hsdr03390
Harnett, C., Ryan, N., & Hynes, B. (2022). Protocol for establishing and evaluating a public and patient panel for organisation science and management principles in healthcare. BMJ Open, 12(10), e062196. https://doi.org/10.1136/BMJOPEN-2022-062196
Health Research Board. (2018). Public and Patient Involvement in Research. https://www.hrb.ie/funding/funding-schemes/public-and-patient-involvement-in-research/
Higginson, I. J., Evans, C. J., Grande, G., Preston, N., Morgan, M., McCrone, P., Lewis, P., Fayers, P., Harding, R., Hotopf, M., Murray, S. A., Benalia, H., Gysels, M., Farquhar, M., & Todd, C. (2013). Evaluating complex interventions in End of Life Care: The MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Medicine, 11(1), 1–11. https://doi.org/10.1186/1741-7015-11-111/FIGURES/2
Hoddinott, P., Pollock, A., O’cathain, A., Boyer, I., Taylor, J., Macdonald, C., Oliver, S., & Donovan, J. L. (2018). How to incorporate patient and public perspectives into the design and conduct of research. F1000Research, 7. https://doi.org/10.12688/F1000RESEARCH.15162.1
International Association for Public Participation (IAP2). (2025). International Association for Public Participation.
Li, K., & Martin, E. (2010). Public Engagement in the Development of Healthcare Policies and Programs (Issue December).
Liabo, K., Boddy, K., Burchmore, H., Cockcroft, E., & Britten, N. (2018). Clarifying the roles of patients in research. BMJ (Clinical Research Ed.), 361(April), k1463. https://doi.org/10.1136/bmj.k1463
Locock, L., Boylan, A. M., Snow, R., & Staniszewska, S. (2017). The power of symbolic capital in patient and public involvement in health research. Health Expectations, 20(5), 836–844. https://doi.org/10.1111/hex.12519
Lomas, J., Fulop, N., Gagnon, D., & Allen, P. (2003). On Being a Good Listener: Setting Priorities for Applied Health Services Research. The Milbank Quarterly, 81(3), 363–388. https://doi.org/10.1111/1468-0009.T01-1-00060
Manafo, E., Petermann, L., Mason-Lai, P., & Vandall-Walker, V. (2018). Patient engagement in Canada: A scoping review of the ‘how’ and ‘what’ of patient engagement in health research. Health Research Policy and Systems, 16(1), 1–11. https://doi.org/10.1186/S12961-018-0282-4/TABLES/5
Manafò, E., Petermann, L., Vandall-Walker, V., & Mason-Lai, P. (2018). Patient and public engagement in priority setting: A systematic rapid review of the literature. PLoS ONE, 13(3), 1–18. https://doi.org/10.1371/journal.pone.0193579
McGrath, S. K., & Whitty, S. J. (2017). Stakeholder defined. International Journal of Managing Projects in Business, 10(4), 721–748. https://doi.org/10.1108/IJMPB-12-2016-0097
Morrow, E., Ross, F., Grocott, P., & Bennett, J. (2010). A model and measure for quality service user involvement in health research. International Journal of Consumer Studies, 34(5), 532–539. https://doi.org/10.1111/j.1470-6431.2010.00901.x
National Health and Medical Research Council. (2023). Consumer involvement. https://www.nhmrc.gov.au/guidelinesforguidelines/plan/consumer-involvement
National Health Service. (2018). Patient and public participation in commissioning health and care: Statutory guidance for clinical commissioning groups and NHS England. 62.
National Health Service. (2021). Accelerated Access Collaborative Patient and Public Involvement.
National Health Service. (2023). Patient and public involvement. https://www.england.nhs.uk/aac/what-we-do/patient-and-public-involvement/
National Institute for Health and Care Research. (2014). Briefing notes for researchers - public involvement in NHS, health and social care research | NIHR. In National Institute for Health and Care Research. https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
National Institute for Health and Care Research. (2019). UK Standards for Public Involvement. https://sites.google.com/nihr.ac.uk/pi-standards/home
National Institute for Health and Care Research. (2020). Public Involvement in Research: A guide for researchers (Keele University Research User Group). https://www.vitae.ac.uk/
National Institute for Health and Care Research. (2023a). PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes | NIHR. https://www.nihr.ac.uk/documents/ppi-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437
National Institute for Health and Care Research. (2023b). The Cambridge University Hospitals Patient and Public Involvement (CUH PPI) panel. https://cambridgebrc.nihr.ac.uk/public/the-cuh-ppi-panel/
National Institute for Health and Care Research. (2023c). UK Standards for Public Involvement. https://www.rds-wm.nihr.ac.uk/uk-standards-for-public-involvement
National Institute on Minority Health and Health Disparities. (2023). Community-Based Participatory Research Program (CBPR). National Institutes of Health. https://www.nimhd.nih.gov/programs/extramural/community-based-participatory.html
NIHR. (2012). INVOLVE (2012) Briefing notes for researchers: involving the public in NHS, public health and social care research. INVOLVE, Eastleigh. In National Institute for Health Research. http://www.invo.org.uk/
NIHR. (2022). Briefing notes for researchers - public involvement in NHS, health and social care research (Issue March). https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
NIHR INVOLVE. (2015). Public involvement in research: values and principles framework. October, 20. http://www.invo.org.uk/wp-content/uploads/2015/11/Values-and-Principles-framework-final-October-2015.pdf
One Island Health System: Prince Edward Island. (2016). Engagement Toolkit. http://www.gov.pe.ca/photos/original/hpei_engagetool.pdf
Pereira, A. S. et al. (2018). Metodologia da pesquisa científica. [free ebook]. Santa Maria. Editora da UFSM.
Rother, E. T. (2007). Revisão sistemática x revisão narrativa. Acta Paulista de Enfermagem. 20(2), 5-6.
Snyder, H. (2019). Literature review as a research methodology: An overview and guidelines. Journal of Business Research. 104, 333-9. Doi: https://doi.org/10.1016/j.jbusres.2019.07.039.
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., & Tysall, C. (2017). GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research. BMJ (Online), 358. https://doi.org/10.1136/bmj.j3453
Stocks, S. J., Giles, S. J., Cheraghi-Sohi, S., & Cab, S. (2015). Application of a tool for the evaluation of public and patient involvement in research. BMJ Open, 5(3), 1–8. https://doi.org/10.1136/bmjopen-2014-006390
Tamariz, L., Medina, H., Taylor, J., Carrasquillo, O., Kobetz, E., & Palacio, A. (2015). Are Research Ethics Committees Prepared for Community-Based Participatory Research? Journal of Empirical Research on Human Research Ethics, 10(5), 488–495. https://doi.org/10.1177/1556264615615008/ASSET/IMAGES/LARGE/10.1177_1556264615615008-FIG1.JPEG
Thompson, V. L. S., Ackermann, N., Bauer, K. L., Bowen, D. J., & Goodman, M. S. (2021). Strategies of community engagement in research: Definitions and classifications. Translational Behavioral Medicine, 11(2), 441–451. https://doi.org/10.1093/tbm/ibaa042
Turk, A., Boylan, A., & Locock, L. (2017). A researcher’s guide to patient and public involvement. University of Oxford, 1–26. https://oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf
University of Oxford. (2023). Patient and Public Involvement Panel: Establishing Sustainable Stakeholder Engagement (AIDE Project). https://aideproject.web.ox.ac.uk/PPIP
Welsman, J., Terry, R., & Burchmore, H. (2021). A brief guide to patient and public involvement and qualitative methods within health and social care research. https://www.rds-nw.nihr.ac.uk/wp-content/uploads/2021/11/RDS_Guide_to_PPI_qualitative_methods.pdf
World Health Organization. (1978). Declaration of Alma-Ata.
World Health Organization. (2020). Community engagement: a health promotion guide for universal health coverage in the hands of the people. In Geneva: World Health Organization (Issue February). https://www.who.int/publications/i/item/9789240010529
Worth, A. (2014). Effective patient and public involvement: Guide for researchers. The University of Edinburgh. https://www.ed.ac.uk/sites/default/files/atoms/files/involvingpeople_guide_for_researchers.pdf
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Copyright (c) 2025 Gustavo Santos Paiva Laender Moura, Maria Izaura Sedoguti Scudeler Agnollitto, Vivian Marques Miguel Suen, Fabio Carmona, Rosana Aparecida Spadoti Dantas, Mevhibe Banu Hocaoglu, Nereida Kilza da Costa Lima
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