Consumer participation and organizational development in health care: a systematic review

OBJECTIVE: To provide an overview of published data on user participation in Health Care. BACKGROUND: Active and passive involvement of consumers into agendas associated with Health Care is still an exception. Data on the success of user participation projects in various areas of Health Care are lacking. DESIGN: Systematic literature review using public databases. RESULTS: We identified 467 studies including five systematic reviews describing various participation projects, among them workshops, citizens' panels, focus groups, citizens' juries, and consultation meetings. A general trend favoring a specific method was not observed. The categorization of evaluable studies according to Health Care area (n = 331) yielded the following results: general medicine/preventive medicine (n = 5), internal medicine/oncology (n = 132), obstetrics and gynecology (n = 2), surgery (n = 1), neurology/psychiatry (n = 2), social medicine (n = 16), health worker training (n = 38), and research agenda setting (n = 135). Predefined qualitative parameters were extracted from 69/467 (15%) studies. Sixty one of 69 studies (88%) were retrospective analyses without control groups and without outcome assessment. Six studies had outcome assessment, three judged the outcome as successful, two as negative, and one multi-project study reported 'very successful' project assessments in 24% of the projects. In 18 studies, the level of consumer participation was described as 'informed' in 2/18, 'advisory' in 14/18, and 'decision-making' in 2/18. The following factors associated with project success were identified: adequate financing, partnerships with well institutionalized consumer organizations, advanced project logistics, small-scale projects, and adequate internal and external communication. CONCLUSIONS: Most consumer participation projects were performed in research agenda setting, internal medicine/oncology, and health worker training. Various methods have been used in the projects, the level of consumer participation was low, and the success rate of the investigated projects was moderate. Potential factors associated with project success and future areas of research are discussed.