What Does It Mean to Be a Patient Research Partner? An Ethnodrama

Abstract

There is a trend in medical and health research to involve patients in the research process. A recent role is the patient acting as a research partner in a team of professionals. There are a few publications about these collaborations and the value of research partners. But is the research partner accepted as a credible knower? How can equality in the collaboration be reached? And how to handle tensions between the research partner’s personal agenda and the interests of and burdens on fellow patients? Finally there is the question of how the research influences the research partner’s self-perception. The purpose of this article is to investigate these epistemological, relational, ethical, and existential issues, while presenting an ethnodrama. In this drama, the personal narrative of the research partner, a person with a renal disease, unfolds in dialogue with her research mates, whose voices are also present in the text. The article is based on a health research agenda—setting process with the Kidney Association in the Netherlands.