Open university for older adults: training seniors as research consultants
Universidad de la tercera edad: formación de personas mayores como consultores de investigación
Universidade da terceira idade: formação de idosos como consultores de pesquisas
Mariele Gobo de Oliveira; Graziela Maria Ferraz de Almeida; Matheus Cardoso Moraes Vieira; Fernanda Maria Alves Lima; Cassiane de Santana Lemos; Caroline Iaiz Rodrigues; Mayara Salles Gasparini Patini; Gabriela Pereira Scetta; Marla Andréia Garcia de Avila
Abstract
Objective to describe the experience of researchers in the design and implementation of an event entitled “Training Patients as Research Consultants”.
Method experience report based on an event held in October 2024 by the Open University for Older Adults, as part of the activities of the National Festival Public and Patient Involvement (PPI) – Ireland 2024, at a public university in the interior of São Paulo. The event program was structured in five stages: welcome and introductions; “fact or fake” game; contextualization of research methodology; specialty groups; and identification of research partners.
Results twenty-five older adults participated in the event. The program enabled active engagement and provided insights into participants' level of understanding of scientific information. The specialty groups cardiology, gastroenterology intestinal surgery, neurosurgery, and nephrology — served as listening spaces for participants’ experiences and for sharing what they consider to be research priorities.
Conclusion and implications for practices the experience highlighted the importance of including patients and caregivers in the process of formulating research questions. Although this approach is still emerging in Brazil, it offers great potential for fostering research that is more responsive to societal needs, reinforcing the link between science and the community.
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Resumo
Objetivo: descrever a experiência de pesquisadores na formulação e execução de um evento intitulado “Formação de pacientes como consultores de pesquisa”.
Método: relato de experiência sobre o processo de realização de um evento ocorrido em outubro de 2024, pela Universidade da Terceira Idade, como parte das atividades do National Festival Public and Pacient Involvement (PPI) - Ireland 2024, de uma universidade pública do interior paulista. A programação foi organizada em cinco etapas: boas-vindas e apresentação; jogo fato ou fake; contexto da metodologia de pesquisa; grupos de especialidade e identificação de parceiros.
Resultados: vinte e cinco idosos participaram do evento. A programação possibilitou a participação dos participantes e a compreensão preliminar do nível de entendimento a respeito das informações científicas apresentadas. Os grupos de especialidade foram divididos em cardiologia, gastrocirurgia, neurocirurgia e nefrologia, configurando um espaço de escuta para as experiências dos participantes, assim como a partilha do que estes consideravam ser as prioridades de pesquisa.
Conclusão e implicações para a prática: destacou-se a importância da participação de pacientes e cuidadores no processo de formulação de questões de pesquisas. Embora a temática seja recente no Brasil, novas discussões devem ser promovidas, objetivando que as pesquisas possam contribuir de maneira efetiva para a sociedade.
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References
1 Bishop EL, Bonhomme J, Baranec D, Wamsley A, Ronsky JL, Clark ML. Harnessing the power of patient engagement in evaluating a novel brace for knee osteoarthritis: a co-produced commentary. Res Involv Engagem. 2024;10(1):108.
2 Kirillovich M, Rajabali S, Wagg A. Exploring the priorities of older adults in managing urinary incontinence: a patient-oriented research approach. Can Geriatr J. 2024;27(4):473-84.
3 Rouncefield-Swales A, Harris J, Carter B, Bray L, Bewley T, Martin R. Children and young people’s contributions to public involvement and engagement activities in health-related research: a scoping review. PLoS One. 2021;16(6):e0252774.
4 Biddle MSY, Gibson A, Evans D. Attitudes and approaches to patient and public involvement across Europe: a systematic review. Health Soc Care Community. 2021;29(1):18-27.
5 INVOLVE. What is public involvement in research? [Internet]. London: National Institute for Health Research; 2015 [citado 2025 maio 23]. Disponível em:
6 Longo E, Chagas PS, Magalhães AG, Coelho de Morais CD, Monteiro KS. Envolvimento do paciente e do público em pesquisas. Santa Cruz: FACISA; 2024.
7 Wilsher SH, Brainard J, Loke Y, Salter C. Patient and public involvement in health literacy interventions: a mapping review. Res Involv Engagem. 2017;3(1):31.
8 Denegri S, Coldham T, Eglin S, Frost R, Kerridge L, Matthews R et al. Going the extra mile: improving the nation’s health and wellbeing through public involvement in research. London: National Institute for Health Research; 2015.
9 National Institute for Health Research. Taking stock—NIHR public involvement and engagement. London: National Institute for Health Research; 2019.
10 Canadian Institutes of Health Research. Strategy for Patient-Oriented Research (SPOR): patient engagement framework [Internet]. Ottawa: CIHR; 2014 [citado 2025 set 18]. Disponível em:
11 National Health and Medical Research Council, Consumers Health Forum of Australia. Statement on consumer and community participation in health and medical research [Internet]. Canberra: NHMRC; 2002 [citado 2025 maio 23]. Disponível em:
12 Patient-Centered Outcomes Research Institute [Internet]. Washington, D.C.: PCORI; 2011 [citado 2025 maio 23]. Disponível em:
13 Ní Shé É, Cassidy J, Davies C, De Brún A, Donnelly S, Dorris E et al. Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Res Involv Engagem. 2020;6(1):46.
14 Silva AS, Facey K, Bryan S, Galato D. A framework for action to improve patient and public involvement in health technology assessment. Int J Technol Assess Health Care. 2021;38(1):e8.
15 Freitas Lopes AC, Novaes HMD, De Soárez PC. Does patient and public involvement impact public health decision-making? A 10-year retrospective analysis of public consultation in Brazil. Health Res Policy Syst. 2023;21(1):72.
16 Bensenor IM, Goulart AC, Thomas GN, Lip GYH. Patient and public involvement and engagement (PPIE): first steps in the process of the engagement in research projects in Brazil. Braz J Med Biol Res. 2022;55:e12369.
17 Koontz A, Duvall J, Johnson R, Reissman T, Smith E. “Nothing about us without us:” engaging at users in at research. Assist Technol. 2022;34(5):499-500.
18 Taylor LL, Hong AS, Hahm K, Kim D, Smith-Morris C, Zaha VG. Health literacy, individual and community engagement, and cardiovascular risks and disparities. JACC CardioOncol. 2024;6(3):363-80.
19 National Institute for Health Research. What is Patient and Public Involvement in health and social care research? [Internet]. Leeds: NIHR; 2025 [citado 2025 maio 23]. Disponível em:
20 National Institute for Health Research. A brief guide to public involvement in funding applications [Internet]. Leeds: NIHR; 2020 [citado 2025 maio 23]. Disponível em:
21 Bird M, Ouellette C, Whitmore C, Li L, Nair K, McGillion MH et al. Preparing for patient partnership: a scoping review of patient partner engagement and evaluation in research. Health Expect. 2020;23(3):523-39.
22 Wallace SKA, Bucknall TK, Myles PS. Consumer engagement in perioperative clinical trials. Anesth Analg. 2022;135(5):1001-10.
23 Universidade Estadual Paulista, Pró-Reitoria de Extensão Universitária. Guia prático de direitos da pessoa idosa [Internet]. São Paulo: UNESP; 2013 [citado 2025 maio 22]. Disponível em:
24 Fórum de Pró-Reitores das Instituições. Política Nacional de Extensão [Internet]. Manaus: FORPROEX; 2012 [citado 2025 maio 22]. Disponível em:
25 Adamo CE, Esper MT, Bastos GCF, Sousa IF, Almeida RJ. University of the Third Age: the impact of continuing education on the quality of life of the elderly. Rev Bras Geriatr Gerontol. 2017;20(4):545-55.
26 PPI Ignite Network [Internet]. Dublin; 2025 [citado 2025 maio 23]. Disponível em:
27 Chudyk AM, Stoddard R, Duhamel TA, Andreas B, Ashe MC, Daly-Cyr J et al. Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers. Health Res Policy Syst. 2024;22(1):24.
28 Phelps EE, Tutton E, Griffin X, Baird J. A qualitative study of patients’ experience of recovery after a distal femoral fracture. Injury. 2019;50(10):1750-5.
29 Boivin A, Richards T, Forsythe L, Grégoire A, L’Espérance A, Abelson J et al. Evaluating patient and public involvement in research. BMJ. 2018;363:k5147.
30 Boney O, Bell M, Bell N, Conquest A, Cumbers M, Drake S et al. Identifying research priorities in anaesthesia and perioperative care: final report of the joint National Institute of Academic Anaesthesia/James Lind Alliance Research Priority Setting Partnership. BMJ Open. 2015;5(12):e010006.
31 Dorris ER, Grealis S, Kegl C, Kennedy N, Larkin L, Lynch B et al. Priorities for rheumatic and musculoskeletal disease research in Ireland. BMC Rheumatol. 2022;6(1):55.
32 Gray R, Brasier C, Zirnsak TM, Ng AH. Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals: a descriptive study. Res Involv Engagem. 2021;7(1):88.
33 National Institute for Health Research. Patient and public involvement in health and social care research: a handbook for researchers [Internet]. Leeds: NIHR; 2024 [citado 2024 out 13]. Disponível em:
34 National Institute for Health Research. A brief guide to public involvement in funding applications [Internet]. 2024 [citado 2024 out 13]. Disponível em:
35 Bergholtz J, Wolf A, Crine V, Cleeve H, Santana MJ, Björkman I. Patient and public involvement in healthcare: a systematic mapping review of systematic reviews - identification of current research and possible directions for future research. BMJ Open. 2024;14(9):e083215.
36 Paveley AM, Hall H, Mudford L, Partridge J, Dhesi J. Including the voice of older people in the co-design of perioperative pathways of care. Future Healthc J. 2023;10(2):143-6.
37 Golenya R, Chloros GD, Panteli M, Giannoudis PV, Howard A. How to improve diversity in patient and public involvement. Br J Hosp Med. 2021;82(6):1-8.
38 Bytautas J, Grigorovich A, Carson J, Fowler J, Goldman I, Harris B et al. Conversation for change: engaging older adults as partners in research on gerotechnology. Res Involv Engagem. 2024;10(1):27.
Accepted date:
09/18/2025
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