Traditionally, people directly affected by health conditions have often been relegated to the passive role of “subjects” in health research [1]. Conversely, participatory research is conducted with and for people with lived experiences (PWLE) [2], such as patients, families, or caregivers. PWLEs have invaluable knowledge about the condition under study, having encountered it personally [3]. Participatory research not only advances patient-centered research [4] but also improves the entire research process by making it more relevant, adequate, meaningful, and impactful for the researchers and the communities, while promoting inclusivity, relevance, and empowerment of the PWLE involved [5, 6].

It is well known that, while vulnerable and disadvantaged populations are more likely to experience poor health, they are less likely to be involved in public health research because of their social or physical location, health status, or the circumstances that make them more vulnerable [7–9]. However, involving such vulnerable populations ensures that research results do not favor the point of view of more advantaged groups; support the generation of study results that are more adequate, relevant, and empowering for vulnerable populations and the community [8]; enhance the representation of vulnerable groups, increase the visibility of their needs, and enable advocacy efforts on their behalf; and streamline the dissemination of research findings [8]. Furthermore, the engagement of vulnerable populations has been beneficial for the populations themselves, fostering a sense of empowerment as they are encouraged to voice their experiences and push for enhancements in their living conditions [10]. While guidance exists on how to engage specific vulnerable populations, such as people with low socio-economic status, victims of sex abuse, or asylum seekers [7, 10, 11], little is known about how to specifically engage people who are vulnerable due to health conditions.

The objective of this paper is to describe a tailored method for the engagement of vulnerable people in participatory health research.

Our engagement activities were part of a project investigating the impact of the COVID-19 pandemic on health service use in people with dementia in Canada [12]. People with dementia face multiple barriers to their engagement in research due to several reasons, such as their cognitive impairments, internalized stigma and misconceptions, lack of opportunity and awareness of research opportunities [4, 13–15], physical limitations, increased dependence on their care partners [15], and attitudinal biases of researchers [16].

By sharing our approach, we suggest that it is indeed possible to engage with such vulnerable populations using tailored strategies: 1) recruitment and status of PLWE in the research project, 2) involving PWLE throughout all phases of the research project, 3) designating a single research contact person for all communications with PWLE, 4) developing an appropriate onboarding strategy, 5) offering flexible engagement, and 6) adapting how meetings are conducted. The sequence in which these strategies are presented does not align with their respective priority and significance. Research teams are advised to assess both the significance and sequence of the following strategies based on their team’s specific needs and characteristics.

Our tailored approach was well-received by all: PWLE, researchers, students, and collaborators. We were able to take into account PWLE’s experiences to inform the research project in an ongoing and inclusive manner. Furthermore, the contribution of the PWLE to the project resulted in many impactful outcomes. For instance, we revised the research questions and framed the project in a human rights framework; we added equity-based stratifications to our quantitative analysis plan; and we built the interview guides with direct input from the PWLE (See Figure 1: Research steps and impacts of the involvement of persons with lived experience). PWLE and researchers, positively satisfied with the process, agreed to share their experience with the media, and many are co-authors on this paper.

Our experience revealed that the potential issues related to engagement of PWLE in participatory research are mitigated through adequate planning, open dialogue, and the provision of necessary support. Furthermore, it was useful to recruit a large group of PWLE and dedicate meeting time to hear their voices to avoid power dynamics between PWLE and academic researchers. However, this type of approach is time consuming, necessitating the dedication of important resources, including a trained contact person, and efforts to develop and implement a meaningful engagement strategy and to reconcile various opinions.

Nevertheless, using this engagement strategy enhanced the research process; it became more inclusive and ultimately more fruitful for all parties involved. Our approach to engaging vulnerable PWLE in health research not only fostered meaningful contributions from PWLE but also prompted valuable adjustments and enhancements to our research project.