Engaging individuals in digital health research panels: A qualitative study including participants in vulnerable positions

Individuals in vulnerable circumstances often face challenges in accessing and utilizing digital health tools. They are also underrepresented in digital health research. Consequently, digital health tools may not be aligned with their specific needs and requirements, potentially intensifying health disparities. A research panel especially involving individuals in a vulnerable position could increase their representation in digital health research. This study examined motivation, facilitators and barriers, and prerequisites for initial participation and sustained involvement in a panel for digital health research. We conducted 23 semi-structured interviews with mainly individuals in vulnerable positions. Interviews were audio recorded, transcribed, coded and thematically analysed. The results indicated that most participants were motivated for engagement in a research panel on digital health. They aspired to contribute to the accessibility and usability of digital health, thereby benefiting not only themselves but also their peers. Additional motivations were to stay informed and to learn from developments in the field. Participants perceived recruitment efforts in community centres or the distribution of inclusively designed flyers as the most effective methods. Clear communication and timely feedback of results emerged as the most significant factors in sustaining long-term enthusiasm for panel participation. As the study was conducted in the Dutch context, cultural and contextual factors may limit the generalisability of the results to other settings. Nonetheless, by fostering intrinsic motivation, tailoring recruitment approaches, and addressing practical barriers, research panels can facilitate meaningful participation and contribute to the equitable development of digital health interventions.Author summary: In this study, we investigated how individuals in vulnerable circumstances can be more meaningfully involved in research projects on digital health. Most of these individuals face difficulties in using digital health tools. Additionally, they are rarely included in research through which these tools are developed, resulting in tools that may not meet their needs and could even widen existing health gaps. We spoke with 23 people, most of whom were in vulnerable situations, to understand what motivates them to join a research panel, what helps or hinders their participation, and what is needed to keep them engaged over time.