Research on Equal Terms?

Patient Science in the Tension between Everyday Knowledge and Clinical Knowledge Production

Abstract

The participation of patients in medical research represents a new trend in Citizen Science, the participation of lay people in research, and is referred to as 'patient participation' or Patient Science. Especially in the field of chronic diseases, patients shall be able to provide new insights into everyday life with their disease and participate in the research process themselves. The claim goes so far that patients are involved from the formulation of the research question to the interpretation of the results, because they can provide great value for medicine as experts of their everyday life topics. However, during my research on the design of this patient participation, I encountered four tensions. These are the clinical timing of scientific research, the necessary competencies of patients to participate in research, the benefit expectations of different actors, and the distribution of roles in research collaboration. The analysis of these different tensions enables reflection and negotiation in order to further develop the research trend of Patient Science.