Identifying potential barriers and solutions to patient partner compensation (payment) in research

Abstract

Abstract Research that engages patients on the research team is often supported by grant funding from different organizations and, in some cases, principal investigators (who control the grant funding) provide patient partners with compensation (or payment) for their contributions. However, we have noted a gap in resources that identify and address barriers to compensating patient partners (no matter the size, degree or length of their engagement). In this paper, we present thoughts and experiences related to barriers to compensating patient partners with the goal of helping individuals identify and find solutions to these obstacles. Based on our experiences as individuals who live with chronic conditions and are patient partners, and those who are researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture of research teams, preconceived beliefs about the skills and abilities of patient partners, and expectations placed on patient partners. We demonstrate these barriers with real life examples and we offer some solutions. To further demonstrate these barriers, we ask readers to reflect on some scenarios that present realistic parallel situations to those that patient partners face. The intention is to illustrate, through empathy or putting yourself in someone else’s shoes, how we might all do better with respect to institutional barriers related to patient partner compensation. Last, we issue a call to action to share resources and identify actions to overcome these barriers from which we will create an online resource repository.

Plain English summary Research teams that engage patients as partners sometimes provide compensation or payment to these patient partners for their contributions. There does not seem to be many resources that identify and tackle barriers to compensating patient partners. Based on our experiences as people who live with chronic conditions and who are patient partners, and as researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture on research teams, preconceived beliefs about patient partners’ skills and abilities, and expectations placed on patient partners. We illustrate these with real-life scenarios and we offer some solutions. Last, we issue a call to action to the global community that engages patient partners in their research teams to share resources and identify actions to overcome these barriers. By doing so, we can begin to create an online resource repository and help patient partners and researchers focus on working together rather than wasting energy navigating a system that is not well adapted to engaging patient partners.