Open university for older adults: training seniors as research consultants

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.

Keywords:
Aged; Community Participation; Health Literacy; Patient Participation; Research

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.

Palavras-chave:
Idoso; Letramento em Saúde; Participação da Comunidade; Participação do Paciente; Pesquisa

Resumen

Objetivo  describir la experiencia de investigadores en el diseño y ejecución del evento “Formación de Pacientes como Consultores de Investigación”.

Método  informe de experiencia sobre la organización de un evento celebrado en octubre de 2024 por la Universidad de la Tercera Edad, en el marco del National Festival Public and Patient Involvement (PPI) - Irlanda 2024, una universidad pública del interior del estado de São Paulo. El programa se organizó en cinco etapas: bienvenida e introducción; ¿verdad o mentira?; contexto de la metodología de investigación; grupos de especialidad; e identificación de socios.

Resultados  veinticinco adultos mayores participaron en el evento. El programa facilitó la participación de los participantes y una comprensión preliminar del nivel de comprensión de la información científica presentada. Los grupos de especialidad se dividieron en cardiología, gastrocirugía, neurocirugía y nefrología, brindando un espacio para escuchar las experiencias de los participantes y compartir sus prioridades de investigación.

Conclusión e implicaciones para la práctica  se destacó la importancia de la participación de pacientes y cuidadores en el proceso de formulación de preguntas de investigación. Aunque el tema es reciente en Brasil, se deben promover más discusiones, buscando que las investigaciones contribuyan efectivamente a la sociedad.

Palabras clave:
Alfabetización en Salud; Anciano; Investigación; Participación de la Comunidad; Participación del Paciente

INTRODUCTION

Participatory research is a methodological approach that brings together individuals with experience of the disease or issue being studied, together with researchers.¹-³ In the 1950s, this concept began to be used in developed countries, where it was classified as a crucial element for the success of health research and produced significant results in different countries. ⁴ Patient and Public Involvement and Engagement (PPIE), also known as Patient and Public Involvement (PPI), is one form of participatory research. In Brazil, patient participation follows the term translated as “Patient and Public Involvement” (PPI).⁵,⁶

PPI is a concept that involves the active participation of the public in one or more stages of the research. This participation occurs alongside researchers and may include setting priorities, i.e., designing, managing, conducting, and disseminating the research with the researchers involved.⁷ The first advisory group on PPI was created in the United Kingdom in 1996 and later evolved into INVOLVE, a leading institution in the field.⁵

INVOLVE defines participatory research as research conducted “with” or “by” members of the public rather than “about,” or “to them”, and involvement as “where information and knowledge about research are provided and disseminated.” ⁵,⁸,⁹ After its emergence, other government-supported initiatives were implemented in countries such as Canada, the United States, among others.

In 2011, Canada’s Strategy for Patient-Oriented Research (SPOR)¹⁰ was established in Canada, and in Australia, the National Health and Medical Research Council (NHMRC) and the Consumers Health Forum (CHF)¹¹ were established.

In 2010, the Patient-Centered Outcomes Research Institute (PCORI)¹² was created in the United States, and in 2017, the PPI Ignite Network, funded by the Irish Health Research Board (HRB) and the Irish Research Council (IRC), was created in Ireland.¹³ In Brazil, there are still few reports, with studies on PPI in the Health Technology Assessment process to be published in 2022 and 2023.¹⁴,¹⁵

In 2022, a study developed PPI groups to formulate research questions in cardiology, to plan research based on their priorities.¹⁶ In 2024, the Patient and Public Involvement Group (PPI Brazil) published the first guidance material on the subject. However, to date, there are no national institutions that guide or regulate the practice.⁶

PPI brings together practices based on empowerment, co-creation, and promoting change,¹⁷ aligned with the understanding of health literacy as a resource for self-care, engagement, and navigation of health services.¹⁸

In the United Kingdom, the National Institute for Health Research (NIHR) highlights PPI as an essential component of high-quality research, encouraging active public involvement. This participation can improve health systems and generate positive impacts on clinical outcomes, ensuring that research is aligned with the concrete needs of patients. In addition, public engagement contributes to improvements in individual, family, and community well-being, promoting a more patient-centered approach and making research results more relevant and applicable to practice.⁵,⁸,⁹

The participation of PPI members can be divided into: involvement (active participation, such as in advisory committees, at different stages of research, directly influencing its development and results); engagement (dissemination of knowledge to the population); and participation (acting as volunteers in research, through interviews, focus groups, or interventions).

PPI members can be patients, caregivers, community members, or health system users who, due to their experiences with the disease and/or health services, contribute to different stages of the research, acting as consultants.⁸,⁹,¹⁹-²¹ Their contributions include study design, funding applications, data collection, and interpretation of results, which can benefit everyone. This approach makes studies more relevant and of higher quality, as it facilitates the population's access to scientific research, improves the clarity of consent forms, suggests appropriate strategies for information collection, identifies meaningful outcomes, and contributes to the effective dissemination of results.²²

Considering the important insights that patients have, the elderly population can make a valuable contribution to research due to their life experiences. In addition, there is currently a closer relationship between universities and the elderly population, facilitated by the Statute of the Elderly, which supported the creation of the Universidade Aberta da Terceira Idade (UNATI).

The university aims to promote the social integration of the elderly through interaction in the academic environment. Thus, in 1993, UNATI was created at the Universidade Estadual de São Paulo (UNESP), linked to the Dean of University Extension and Culture (PROEC).²³ University extension activities play an essential role in disseminating academic knowledge to society, contributing to the promotion of scientific literacy and social participation.²⁴

UNATI promotes education, socialization, health, and well-being among older adults, making them more sociable and healthier, which can contribute to active aging associated with improved quality of life.²⁵ In addition, closer ties with the university can spark older adults' interest in contributing to scientific studies.

Since 2023, the researchers responsible for this report, through partnerships with the PPI Ignite Network, have sought to incorporate PPI into different research projects. The PPI Ignite Network comprises seven universities in Ireland, with a national office at the University of Galway, and includes national and international partners. One of the main objectives of the network is to create a sense of shared learning and promote cultural change in research, so that meaningful engagement throughout the research cycle becomes the norm in Ireland. These partnerships are celebrated annually in October with the National PPI Festival, which brings together PPI members, higher education institutions, community and charitable organizations, and research groups to highlight excellence and promote training.²⁶

In this sense, the first step for PPI in the authors' scenarios was to train patients and caregivers to act as research consultants. As part of the PPI 2024 Festival, the authors' institution's UNATI, promoted an event entitled: “Connect, Collaborate, Celebrate.”²⁶ Thus, this study aims to describe the experience of researchers in the formulation and execution of the event “Training patients as research consultants.”

METHOD

This is an experience report on the process of organizing the event “Training patients as research consultants.” The event was held in October 2024 at a public university in the interior of São Paulo, organized by four professors, a nurse from the health service, two undergraduate students, and three graduate students.

The event was promoted by UNATI on social media, associations, clubs, and clinics in the region. In addition, patients and caregivers treated by Cardiology, Gastrointestinal Surgery, Neurosurgery, and Nephrology departments of a university hospital affiliated with the university were invited. Registrations were made by telephone.

The training was held in the afternoon, following a previously prepared five-step program, as shown in Figure 1.

Figure 1
Program for the event “Training patients as research consultants”.

Stage 1, called “Welcome and introduction,” was the first part of the event. Participants were welcomed and directed to sit in a conversation circle, where they received identification badges and materials for taking notes, if they wished. This was followed by an icebreaker activity to introduce the organizing team, in which each member said their name, a quality that began with the same initial as their name, and their area of expertise. The participants followed the same dynamic, but instead of their area of expertise, they indicated the health service where they received treatment or worked as caregivers among the four previously defined specialties.

Stage 2 consisted of a game testing the accuracy of information — Fact or Fake — in which the organizers created a game using recent news stories related to health published in the media. Some were true, representing the facts, and others were modified, containing fallacies or lacking scientific proof, representing fake news. Participants were asked to discuss in small groups whether such news was fact or fake, justifying their answers. Different news items were given to the groups and, after the discussions, each group shared its answers with all participants.

In stage 3, the context of scientific research methodologies and forms of collaboration was presented, with a brief introductory lesson on the process of constructing scientific research. In this lesson, the research cycle was explained, from defining a topic to implementing the scientific method, relating it in a playful way to a cake recipe. The language used was adapted to the target audience and included the concept of the PPI methodology and how participants could collaborate in research. They also watched a video in which an EPP member from Ireland recounted their experience of participating as a collaborator in a clinical trial, with the aim of encouraging the group from Brazil.

In stage 4, participants were divided into small groups, considering the experiences reported in stage 1 and grouping them into four areas: Cardiology, Gastrointestinal Surgery, Neurosurgery, and Nephrology. In these groups, the following guiding questions were presented: “Do you have or are you a caregiver for someone who has a disease (or have you cared for someone in the past)?”, “Describe in one word what living with the disease means to you,” and “If you were part of a research team, what would be the priority in researching your disease or the disease of the person you care for?”.

Step 5 consisted of identifying potential partner patients, at which point participants, gathered in small groups by specialty, were invited to fill out an electronic form if they were interested in joining a future PPI group.

This experience report was not reviewed by the institution's Research Ethics Committee (REC), since the participants were not included as research subjects, and no recordings or transcripts of statements were made. Participant data related to age, gender, and specialty were obtained through telephone registration.

RESULTS

Twenty-five elderly people of both sexes participated in the event. The start of the activities, with an icebreaker followed by a true or false game, proved indispensable for achieving the proposed objectives, as it enabled greater engagement by the participants and allowed for a brief assessment of their level of understanding of the scientific information presented. This preparation introduced participants to the third stage, which addressed the scientific method and the phases of research, highlighting the importance of verifying the accuracy of information. The presentation of a video by a PPI member elucidated how one can contribute to research through a real-life case study.

Next, the participants were divided into groups corresponding to four areas, according to the expertise of the teachers involved, who acted as facilitators. Those who had no experience in any of the areas were allocated to those closest to the theme.

Cardiology group

The Cardiology group consisted of seven participants: three patients, two caregivers, a hospital nurse with experience in the field, and a professor affiliated with the University. Initially, each member shared their experience with heart disease and its repercussions in an interactive approach.

Next, when asked about the first word that came to mind when thinking about their experience with the disease, they mentioned: “love,” “quality of life,” “gratitude,” “acceptance,” and “learning.” Each participant was able to listen and reflect on the positions of the others regarding their experiences, as well as understand the reasons that led them to choose those words.

Finally, we sought to identify which topics the participants considered priorities for future research. Among the suggestions, the need for greater dissemination of the Cardiology service stood out, so that more people have access to the available technologies. In addition, it was suggested that the guidance provided during consultations—both on procedures and on the proposed treatment—be adapted to a language more accessible to patients.

Gastrointestinal surgery group

The Gastrointestinal Surgery group consisted of a professor, a graduate student, and four patients, two of whom had previously undergone colorectal surgery, one had undergone urological surgery, and one was undergoing treatment for diverticular disease.

At the beginning of the activities, the patients introduced themselves and shared their previous experiences with clinical and surgical treatments. This moment encouraged the exchange of experiences and brought the group members closer together, enabling them to share their expectations, challenges, and coping strategies in the face of chronic disease diagnoses and/or the need for surgical intervention.

Next, the patients discussed their individual experiences of living with a chronic disease or undergoing surgery, highlighting feelings of fear, abandonment after surgery, regret for having undergone surgery without proper medical guidance, uncertainty about the prognosis, and conformity in the face of a health condition understood as a process to be overcome.

In the last stage of the meeting, patients were asked about the topics and discussions they considered important in a research project. The group mainly cited research on less invasive methods for diagnosis and surgery; assessment of nursing professionals' perceptions of the care process, work, and remuneration; the form of communication of medical diagnoses; and treatments related to gastrointestinal diseases, such as diverticulitis, as well as other conditions, such as ophthalmic and hearing diseases.

Neurosurgery group

The Neurosurgery group consisted of two professors, a neurosurgeon, a nurse, an undergraduate student, and two graduate students, as well as two caregivers and two patients with surgical histories who were or are still being monitored by the health service. The main activity carried out by the group consisted of sharing experiences and reflecting on the health-illness process of those involved. The patients and caregivers had already participated in an ongoing study conducted by some of the authors of this study.

In this context, information was initially obtained about the diseases that led the patients to require neurosurgical intervention, as well as feedback on the tele-nursing protocol in which they had previously participated in another study.

Across this interaction, an evaluation was carried out of the health service offered to patients in the postoperative period of neurosurgery. This qualitative assessment showed positive results but highlighted the need for greater coordination between the hierarchies present in the Unified Health System (UHS), requiring, for example, better communication between the different levels of the network and efficient monitoring by the multidisciplinary team in the post-surgical rehabilitation process.

Next, a discussion was proposed focusing on the experience of living with the disease and/or caring for a sick individual. This discussion addressed the psychosocial aspects of the process of illness and treatment, revealing that patients felt comfortable being listened to, welcomed, and guided. According to their reports, this welcoming attitude was the link that made the healing process less lonely and disorienting. As a way of showing their gratitude, the patients demonstrated their willingness to actively participate in Health Literacy actions, taking the lead in sharing scenarios.

Subsequently, after addressing the stories that were shared in a satisfactory and welcoming manner, among the responses to the last guiding question, one patient suggested that the service be improved so that, when making the first contact at the consultation, it would be used as a more efficient exploratory tool, considering the signs and symptoms in a therapeutic and less biomedical way, thus integrating the patient into their process of discovering and treating illnesses.

Nephrology group

The Nephrology group consisted of a professor, an undergraduate student, a graduate student, and five participants, all of whom were patients who had received or were receiving treatment at the health service. The process in this group consisted of sharing experiences and discussing their medical histories so that they could get to know each other better.

Initially, it was possible to create a space for listening and reciprocity among the participants, as they shared personal aspects, feelings about their diagnoses, the coping process, the necessary adaptations and lifestyle changes, as well as the adaptation of the entire support network and family members of these participants.

When asked to describe in one word what living with the disease means to them, responses included: sadness, coping based on faith, frightening but also empowering, being close to God, and positivity. Regarding research priorities, they cited research on new drugs for diabetes mellitus, expanding research on autism (one of the participants has a family member with the diagnosis), and the search for solutions for cancer.

The small group activities by specialty helped participants engage in discussions to analyze and synthesize the content covered, allowing them to contribute to various aspects of care in a specific area. At the end of the meeting, patients reported satisfaction in participating in the activities and interest in contributing to the development of research at the university, recognizing themselves as individuals capable of collaborating with their experience and perception of the health-disease process. In addition, they highlighted the importance of participating in events in this format and being able to contribute in some way to other people. They also emphasized that they would participate in new activities in the same format.

DISCUSSION

The event was organized using active methodologies to stimulate activities and enable participants to engage with the topic. It encouraged older adults to share their experiences with health and illness and provided them with the opportunity to participate as members of the PPI in small group activities in a space dedicated to the exchange of experiences. In sharing their experiences, different ways of coping were observed among those living with chronic diseases (Cardiology and Nephrology groups) and those who had undergone surgery (Gastrointestinal Surgery and Neurosurgery groups), reflected in the words shared in the groups.

Regarding the research priorities raised, the use of services, accessible language, general guidance and information, consideration of holistic care, and less invasive pharmacological and diagnostic treatments were suggested in more than one group. Regarding access to information, a participatory research study conducted in Canada aimed to understand the needs of older adults with urinary incontinence and identified 11 research and education priorities. However, the main gap identified was also the translation and mobilization of knowledge, as well as accessibility to research findings, highlighting the need to make research evidence clear and understandable to older adults through educational programs and materials.²

Training patients as consultants was the first step in enabling older adults to receive research-oriented health education. Integrating them into research groups, respecting each participant's desired level of engagement, and continuing the training process with PPI members constitutes the second step, allowing the research questions raised to be discussed in depth. In 2022, the Canadian SPOR network held a workshop with researchers and PPI members to discuss the future of patient participation in research in Canada and proposed that, given the international similarities and differences, the global patient engagement community would benefit from international conferences to share and discuss current approaches and the next steps for EPP.²⁷

Establishing research priorities through consultation with different stakeholders has proven to be a valuable approach to aligning scientific objectives with the real needs of patients, caregivers, and healthcare professionals. The inclusion of public representatives, as in the PPI model, has contributed not only with their lived experiences but also with insights relevant to research funding and direction, reinforcing or challenging emerging themes in qualitative studies.²⁸ This practice, still recent in some contexts, favors the production of more meaningful evidence for clinical practice and health policy development.²⁹

A notable example of the application of PPI in defining research agendas was a study conducted in the United Kingdom, which identified priorities in anesthesia and perioperative medicine.³⁰ Through multiple workshops and participatory methods such as group consensus, 25 relevant issues were discussed, culminating in the selection of the ten research questions considered to be the highest priority. This initiative is recognized as one of the most comprehensive ever undertaken in the field, illustrating how joint deliberation between researchers, professionals, and patients can direct resources and efforts to areas of greatest potential impact.

A nationwide participatory process was conducted to identify the main research priorities in rheumatic and musculoskeletal diseases in Ireland.³¹ The initiative involved two phases of surveys with patients, caregivers, healthcare professionals, and researchers, totaling more than 1,000 participants throughout the study. After collecting more than 2,000 suggestions for research topics and consolidating them into 38 topics, three priority areas were defined: strategies to prevent disease progression, improving diagnosis and understanding its impacts, and effective approaches to pain management.

However, nurses are encouraged to take ownership of the topic and reflect on the benefits of including patients and the public in their research, not just to identify priorities. Patients and the public can contribute to research projects using different methodologies, getting involved in various activities (such as reviewing materials, collecting data, disseminating knowledge), and at different stages of the research (initial, throughout, or at the end).³²-³⁴

When including PPI in research, the researcher should consider the beneficial aspects³⁵ as well as possible obstacles. In this sense, previous research highlights challenges such as: the heterogeneity of PPI contributions, low levels of health and digital literacy, availability of time,³⁶ sociocultural aspects, individual barriers such as mistrust, and concerns about confidentiality of information. The importance of participant recruitment, which must address aspects of accessibility and inclusion, is noteworthy.³⁷

Although nursing research could benefit significantly from the contribution of PPI, its application is still limited.³²,³⁵ And in all areas of health, there are still many aspects that need to be improved, especially in developing countries.³⁵ A literature review that mapped 37 review studies highlighted that one of the most frequently pointed out research gaps is the absence of studies with robust designs capable of allowing replication, long-term follow-up, and cost-effectiveness evaluation of the benefits of PPI. Thus, there is a need for consensus on the use of terminology. The review also highlights the global reach of PPI, with primary studies included in 73 countries on all continents, although there is less research conducted in South America.

Finally, the use of older adults as consultants in research aims to bring studies closer to the real needs of this population, in addition to reducing the bias often present in the design, collection, and analysis of data in research on aging. Many studies are conducted by young researchers with limited life experience, which can influence the definition of priorities, the design of research, and even the results obtained. In this context, it is essential to involve older adults as active partners in research, both in the formulation of public policies and in the development of technologies that promote healthy aging.³⁸

Based on their experience with the workshop, the authors conducted a self-assessment of the activities carried out, which resulted in better control of the time allocated to moderation. However, the experience remains a reference for new workshops being organized by the group, aimed at training adults, seniors, and adolescents as research consultants.

An important limitation of this study is that it is an experience report, which implies the absence of systematic evaluation and validation methods typical of empirical research or structured PPI initiatives. Although representatives participated in key stages of the process, this is not a formally designed PPI in accordance with international guidelines. The study aimed at identifying research priorities requires the use of an appropriate and robust methodology. In addition, the scope was restricted to only four areas, which may limit the coverage and representativeness of the needs of other groups or contexts within the field in question. Future studies may expand this consultation process to different audiences and incorporate evaluative methodologies to strengthen the validity and impact of the actions developed.

CONCLUSIONS AND IMPLICATIONS FOR PRACTICE

This study reported on the teaching experience of developing and implementing a training course for research consultants, highlighting the importance of patient and caregiver participation in the process of formulating and conducting scientific research. The experiences of older adults proved particularly valuable for the development of projects that truly assess individuals' real needs and can contribute to better coping with the health-illness process. Thus, the event confirmed to the organizers the relevance of the PPI methodology in research formulation, in addition to enabling the construction of partnerships with those who felt comfortable contributing in various ways.

It is worth noting that personal motivations, levels of education, and health literacy are factors that can influence the acceptance and permanence of individuals in PPI groups. Thus, the reported experience is an essential step before conducting research involving PPI, highlighting the need for its improvement and resumption whenever necessary.

It is hoped that this initial approach will favor the production of more applied science with effective returns for the target audience under investigation. Although the topic remains recent in Brazil, further discussions are necessary to enable research to make more significant contributions to society.

A summary of the activities can be accessed through the video entitled 'Idosos recebem formação para atuarem como consultores de pesquisa' (‘Elderly people receive training to act as research consultants’) on the TV UNESP channel, available at: YouTube – TV Unesp.

ACKNOWLEDGMENTS

To all the elderly people who participated in the Universidade Aberta à Terceira Idade (UNATI) event, whose contribution was essential to the completion of this work.

To the PPI Ignite Network (https://ppinetwork.ie) for its important contributions to the training and exchange of experiences with Brazilian researchers.

• FINANCIAL SUPPORT
  São Paulo Research Foundation. FAPESP Process 2022/11344-1.
• DATA AVAILABILITY RESEARCH
  The content underlying the research text is contained in the article.

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Edited by

• ASSOCIATED EDITOR
  Cristina Lavareda Baixinho https://orcid.org/0000-0001-7417-1732

• SCIENTIFIC EDITOR
  Marcelle Miranda da Silva https://orcid.org/0000-0003-4872-7252

Data availability

The content underlying the research text is contained in the article.

Publication Dates

• Publication in this collection
  21 Nov 2025
• Date of issue
  2025

History

• Received
  30 June 2025
• Accepted
  18 Sept 2025