Appealing to altruism is not enough: motivators for participating in health services research

This pilot study sought to identify motivators and barriers to participating in a longitudinal survey; we interviewed patients and practitioners at a multidisciplinary primary care clinic where the proposed project would be based. While altruism motivates participation in medical research, we found that for many potential participants, the opportunity to benefit directly was the primary, and sometimes the only motive to participate or encourage participation in the research project. Patients often wanted direct feedback from their individual results, and they expected to provide consent before the results were forwarded to other parties such as their practitioners. Similarly, some practitioners were more likely to support the project if participation benefited patients directly. Other factors were also identified that influenced the acceptability and perceived risks and benefits of participating. More work is needed to understand these motivators and how patients might benefit directly from participating in health services research, especially when direct medical benefit is not possible.