Invited to the party, but not invited to dance: a qualitative study of patient organizations and their participation in European Union health care policy

Introduction Patient organizations are vital in representing patients’ interests in health care policy, but in complex political structures of the European Union, they may struggle to move beyond tokenistic participation. We explored how patient organizations experience participation in EU health care policy and how they employ empowerment strategies to strengthen their role.Theory We draw on Arnstein’s (1969) Ladder of Citizen Participation and empowerment strategies by Jinia et al. (2021) to conceptualize the varying degrees of participation and how patient organizations influence health care decisions.Method We conducted semi-structured interviews with ten representatives from European patient organizations at national and international levels. Data were analyzed thematically, guided by sensitizing concepts from both theories.Results We found that patient organizations engage in diverse roles and encounter multiple participation opportunities. However, many participants described involvement as primarily consultative, with limited influence on decision-making processes. Political and resource constraints were cited as barriers. Collaboration and networking were recognized as important empowerment strategies. Participants shared experiences of disempowerment, including a lack of recognition, resources, and legitimacy.Discussion Patient organizations are frequently sidelined. Support and active empowerment of patient organizations is needed to enable meaningful participation in health care policy making across the European Union.