Patient participation in priority setting: co-existing participant roles

Reflecting a ‘participatory turn’ in healthcare, a variety of activities have been adopted in many countries to harness the views of patients, relatives and service users. While celebrated as a way of empowering patients and increasing the legitimacy of decisions that impact on patient care, critics contend that practices of patient participation often fall short of the ideals they purport to implement. In this article, we investigate how patients’ participation in medical priority setting corresponds with the regulative ideals of deliberation and how the practices of participation influence the ability of patients to make their voices heard. Building on document analysis and semi-structured interviews with 12 patient representatives and four scientific officers in the Danish Medicines Council, the analysis demonstrates that conflicting notions of valid knowledge constituted a main challenge for patient participation. The study contributes to the literature on patient participation through a conceptualization of four co-existing participant roles: 1) compliant keepers of experiential knowledge, 2) lay experts investing in evidence production, 3) knowledge translators engaged in alliance building, and 4) demonstrators promoting public contestation. We suggest that a main challenge for PP initiatives is to take into account this variation in patients’ engagement.