Equality and Equity in Compensating Patient Engagement in Research: A Plea for Exceptionalism

Abstract

Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board (IRB) to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation (i.e. honoraria). In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine.

Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey

“…Those who did not need or want compensation still recognized the importance of promoting a culture of fair compensation for patient partners. This perspective is consistent with the broader discourse of equity, diversity and inclusion (EDI) in patient partnership where compensation is often mentioned as an important (but insufficient) element to advancing EDI 29–32 . Compensation contributes to ensuring that patient partnership is not limited to those who can afford to volunteer their time and can offset at least some of the socioeconomic barriers to getting involved as a patient partner 23,33,34 .…”

“…This perspective is consistent with the broader discourse of equity, diversity and inclusion (EDI) in patient partnership where compensation is often mentioned as an important (but insufficient) element to advancing EDI. 29 , 30 , 31 , 32 Compensation contributes to ensuring that patient partnership is not limited to those who can afford to volunteer their time and can offset at least some of the socioeconomic barriers to getting involved as a patient partner. 23 , 33 , 34 Partnership initiatives which fail to consider how social location (e.g., income, gender, race) impact one's ability to expend resources to participate in patient partnership often end up engaging the most ‘easy to reach’ individuals—those who are ‘white, well‐educated, and well‐resourced’.…”

What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines

“…Researchers receive professional or academic recognition for their work, yet similar acknowledgements may not always be meaningful to patient partners. Compensation thus represents an opportunity to provide recognition appropriate to the patient context 11–13 . Second, financial compensation can facilitate the participation of individuals who may not have the economic means to be engaged in research 9,12 .…”

“…Compensation thus represents an opportunity to provide recognition appropriate to the patient context. 11 , 12 , 13 Second, financial compensation can facilitate the participation of individuals who may not have the economic means to be engaged in research. 9 , 12 Third, compensation facilitates an inclusive environment that encourages patient partners to freely share their perspectives and maximises the impacts of their engagement.…”