What motivates patients and caregivers to engage in health research?
Patient and public engagement is a cornerstone of contemporary health research aimed at breaking down barriers between research institutions and the communities they serve. While organisations have many reasons to seek patient engagement - from enhancing public trust to facilitating research co-creation - it's equally important to understand why patients want to reciprocate this engagement. So, what is motivating patients to participate in medical research?
1. To represent a perspective and have a voice in research (1)
Engaging in health research empowers patients by providing them with a platform to advocate for their needs. This involvement takes various forms - some patients may actively contribute to research co-design, while others may prefer to provide input on how to effectively communicate new findings to patient populations. Patients seek not only to be heard but also to exert influence over research outcomes that significantly impact their lives. Involvement in health research, particularly concerning conditions they have first-hand experience with, empowers patients by providing a platform to make meaningful contributions to areas where they may feel marginalised or overlooked.
2. To advocate for unmet needs or underserved communities (2)
Historically, marginalised groups have been overlooked in medical research. So, patients or patient representatives may seek to advocate for populations or conditions that are underserved, lack adequate services, are not well understood, or have needs that are not addressed. Engaging with patients from a diverse representation of communities is crucial to ensure an inclusive approach to healthcare.
3. A desire to learn (3)
Many patients who participate in research are motivated by a desire to learn. This may stem from a need to deepen their understanding of their condition or an interest in the research process shaping their treatment options. Research participation also allows patients to cultivate or enhance skills such as public speaking, meeting facilitation, and other research-related abilities that they might not encounter otherwise, making research participation a valuable learning opportunity.
4. To build valuable relationships (3)
Relationships play a pivotal role in motivating patient participation in health research. Endorsement from trusted healthcare professionals is one of the primary factors influencing a patient's decision to engage in research initiatives. Additionally, some patients perceive research participation as an opportunity to cultivate deeper connections with their care teams and the broader research community. Thus, a commitment to understanding and developing relationships with patients is crucial for enhancing patient engagement with research.
5. To make a difference in people's lives or healthcare experiences (3)
A significant number of research participants are driven by altruism; by a desire to contribute to the advancement of health research for the greater good. Rooted in a fundamental aspiration to effect positive change, these individuals aim to support the progress of science, address the needs of future generation and bridge demographic disparities in health research. Beyond personal motivations, patients engage in research with the goal of effecting genuine change within specific areas of care.
Patients are eager to participate in health research programs, motivated by a variety of factors: to improve their own health, contribute to their communities, acquire knowledge, honour their trusted care relationships, and advance healthcare research for the greater good. Engaging patients in research can support comprehensive and impactful research programs.
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References:
Haesebaert J, Samson I, Lee-Gosselin H. et al. "They heard our voice!" patient engagement councils in community-based primary care practices: a participatory action research pilot study. Res Involv Engagem. 2020;6(54). doi:10.1186/s40900-020-00232-3
Shiyanbola OO, Kaiser BL, Thomas GR, Tarfa A. Preliminary engagement of a patient advisory board of African American community members with type 2 diabetes in a peer-led medication adherence intervention. Res Involv Engagem. 2021;7(1):4. doi:10.1186/s40900-020-00245-y
McCarron TL, Noseworthy T, Moffat K. et al. Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement. Health Expect. 2019;22(4):709-720. doi:10.1111/hex.12942