In whose pockets? How small Danish patient organisations balance legitimacy, representation and dependency in collaboration with public sector medical researchers and the life science industry

Abstract

AbstractIt is a commonly accepted idea that complex structural challenges can be solved if private actors, NGOs, and the public authorities collaborate (Brogaard in Politica 47(4):541–560, 2015), a view that has come to frame several publicly funded network activities in Denmark. This article takes its point of departure in one such project aimed at setting up a collaborative network between researchers, patient associations, and life science partners to stimulate growth in research and development. We analyse this project as a social arena with a focus on what is at stake for patient organisations in such a collaboration. Using social worlds and arena theory, we map the negotiation of discourses, images, and positions, thereby answering the questions: What kind of relationships emerge as patient organisations network with researchers and the life science industry in the name of patient centricity and how do patient organisations balance legitimacy, representation, and independence in such collaboration? We argue that patient organisations’ positions are expanding and taking new forms as they perform a balancing act, from which a ‘multiplayer position’ seems to have emerged. Lastly we propose that patient organisations’ complex interdependencies should be acknowledged, and introduce an understanding of ‘cumulative drives’ to capture the nature of these complexities.