User involvement as sharing knowledge – an extended perspective in patient education

BACKGROUND: Patient education is undergoing a paradigm shift in which the perspectives of patients are increasingly being incorporated into learning programs. Access to the users’ experience is now considered a prerequisite for the development of quality health services, but how this user experience is incorporated is somewhat unclear. The inclusion of experiential knowledge and user involvement can challenge professional authority, roles, and working methods because knowledge sharing is different from persuasion, professional explanation, and consent. Dialogue and collaboration between professionals and users are essential to effective user involvement; however, little is understood about the characteristics of their collaboration. OBJECTIVE: To describe characteristics of the collaboration between users and health professionals in developing, implementing, and evaluating patient education courses in hospitals. DESIGN, SETTING, AND METHODS: A field study was conducted in three different hospitals. Data collection comprised open observations in meetings of 17 different collaboration groups with a total of 100 participants, and 24 interviews with users and professionals. The data analyses included both thematic and the Systematic Data Integration approach. RESULTS: Two contrasting types of collaboration emerged from the analyses; knowledge sharing and information exchange. The first was characterized by mutual knowledge sharing, involvement, and reciprocal decision making. Characteristics of the second were the absence of dialogue, meagre exploration of the users’ knowledge, and decisions usually made by the professionals. CONCLUSION: Collaboration between users and health personnel takes place in an asymmetric relationship. Mutual knowledge sharing was found to be more than the exchange of information and consultation and also to be a prerequisite for shared decision making. In developing patient education when users are involved the health professionals have the power and responsibility to ensure that knowledge sharing with users takes place.