Representation in participatory health care decision‐making: Reflections on an Application‐Oriented Model

Abstract

Context:The involvement of lay people in health care decision-making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation.Objective: This paper explores the question of how public participation efforts in collective health care decision-making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts.Results: A conceptual reflection on responsiveness and the characteristics of representative actors in representative-participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations.

Representation in participatory healthcare decision‐making

“…Holetzek and Holmberg 1 point out that as in our study, the representation will always be imperfect. It is clearly important that researchers are aware of this.…”

“…In a fascinating paper, Holetzek and Holmberg emphasize the importance of representation when conducting patient and public involvement (PPI) in research. 1 We therefore reviewed our recent PPI work and considered whether our lay participants met their criteria in terms of responsiveness, characteristics and skills.…”

“…To what extent did our PPI group participants meet Holetzek and Holmberg's 1 criteria for representation? Responsiveness—No.…”

“… Skills—Possibly. Some members of the group appeared to show ‘interest and motivation’, 1 but it was unclear if they could encourage group consensus. …”

Establishing a standing patient advisory board in family practice research: A qualitative evaluation from patients' and researchers' perspectives

“…This might be especially true as most patients joined by personal invitation through their family practitioners, and we have no information why family practitioners approached which patients. This touches the topic of representation, that is always a matter in PPI, when it comes to a selected group of patients speaking for a larger group 27 . We aimed to approach PAB members as patient experts on eye level and therefore decided to not collect a lot of private, health‐related data from them.…”