Patientinvolvering og patientaktivisme i medicinsk forskning: Om autoritet, kredibilitet og forudsætninger for samskabelse

Abstract | Abstract

Patient Involvement and Patient Activism in Medical Research: On Authority, Credibility, and Prerequisites for Co-Creation

This article explores co-production in relation to the development of biomedical knowledge and with primary focus on how patients and publics can play an influential role in producing biomedical knowledge. This is illustrated by three examples of patient activ- ism, or what we call “un-invited” patient involvement, taken from the literature on medical sociology and science studies. Drawing on these examples, we outline different ways in which patients and publics can act not merely as participants who have been invited into research processes by credentialed experts, but as actors, activ- ists and experts in their own right. They can initiate or transform research agendas, build research networks or, even take the lead in knowledge production. In particular, we focus on the strategies through which credibility and authority can be achieved within this medical context and traditional medical ideals of objectivity, neutrality and hard evidence. In closing, we pose new questions and encourage further debate on the role of “uninvited” participation and activism in the co-production of biomedical knowledge.