The use of evidence by health care user organizations

OBJECTIVES: To explore the use of research evidence by consumer and patient organizations and the extent to which their goals and activities are consistent with evidence-based health care and patient-centred care. DESIGN: A mailed survey, telephone and face-to-face interviews of leaders of organizations representing health care users. SETTING: Norway. PARTICIPANTS: Sixty-nine of 109 questionnaires that were mailed were included in our analysis and approximately 20 interviews were conducted with representatives of general consumer and patient advocacy groups and interest groups that focus on particular diseases or disabilities. MEASUREMENTS: Information was collected on the goals of the organizations, the nature of their everyday work, the extent to which research information is required in this work and how research information is accessed and appraised. RESULTS: An important focus of many user groups is peer support. They tend to emphasize experience-based knowledge. A total of 82% of the respondents said that they often or sometimes had use for research results in their work. Research-based information is most often obtained indirectly through physicians or researchers. CONCLUSIONS: Norwegian health care user organizations do not appear to promote evidence-based health care. To the extent that they help to disseminate scientific information, they appear to do so uncritically, relying on few sources and traditional authorities.