Including citizens in institutional reviews: expectations and experiences from the Dutch Healthcare Inspectorate

Background Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health-care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health-care institutions is overlooked in research on patient/citizen participation in health care. Objective This research addressed the following question: What are the (political) expectations for increasing citizen participation in health-care regulation and how do these compare to regulators' expectations and experiences in practice? Design Because of the largely explorative nature of this study, we used qualitative methods (document and web analysis, focus groups and interviews) to answer this question. Results Our study shows that inspectors already have experience with participatory formats that lead to important information. There are three areas where the IGZ is currently increasing citizen participation: (i) providing individuals with information about inspectorate processes and activities, (ii) including patients as sources of information, and (iii) formally reviewing how citizen participation is ensured by health-care institutions. In situations where the patient has the clearest overview of the whole care trajectory, intensive methods of participation deliver valuable information. Conclusions It is important to target participation activities and to capitalize on existing opportunities and activities, rather than creating participation activities for the sake of participation. In this regard, further research on the effectiveness and efficacy of different participatory strategies is necessary.