Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation.

PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles.

We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes.

Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.