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.
Highlights
The “scientific elite” often has been seen as having a monopoly on the development of knowledge in academic institutions collectively referred to as “ivory towers.” By virtue of their advanced education, specialized skills, and knowledge, researchers have been granted authority, credibility, influence, prestige, and power in the production of knowledge
Some patient engagement in research (PER) initiatives even have “patient partners in research” (PPRs) who participate as collaborators with the researchers; the idea behind this collaboration is to recognize patient knowledge to be as important as scholarly knowledge within health research
Participants in this study explored the ethical ramifications of engaging patients in research; they agreed that authorship might foster fair recognition of both patients and researchers in PER
Summary
Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?. 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 the democratization of science. We will argue that the value of that experiential knowledge from PPRs should be acknowledged through its ongoing use, and through recognition of participants who contribute to the creation and application of new knowledge.
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