Patients as research partners; how to value their perceptions, contribution and labor?

Abstract

Citizen Science refers to the consultation, participation, engagement or involvement of the general public in research. Rationales for this interaction include increased public access and involvement of citizens in research, immersion of community values relevant to research, outreach and educational potential with the public, and ultimately, the democratization of science. This paper focuses on the specific subset of citizen science that seeks to engage "patient partners" in health research to gain the valuable experiential knowledge of those living with a disease. Greater patient engagement in research (PER) can provide researchers with insights about citizen values and needs relevant to determining research priorities, methodology, applications and ethical parameters; this would ideally lead to more effective real-world applications. Over the last decade, projects involving patients partners in research (PPR) have varied from mere tokenism and undervaluation to full involvement and empowerment of patient participants - the former, a subject of criticism, and the latter, promoted as an ideal. In this article, we will argue that the value of that experiential knowledge from patient partners in research should not only be acknowledged through its ongoing use, but also through recognition of participants who contribute to the creation and application of new knowledge. We will explore types of recognition that might be attributed to PPR, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the benefial outcomes of research applications. We will also consider whether such types of recognition could be applied to the broader field of citizen science.

Keywords: fair recognition; patient empowerment; patient engagement in research; patient partners in research; tokenism.

Figure 1 –

Mobilization of the types of knowledge in the conduct of the tasks of a PER project