World Café Report: Practiced patient participation

How can patients’ voices take better account in decisions on all levels?

The rounds of discussion aspired to discuss the understanding and current status of patient participation on various levels. No common understanding of patient participation exists, neither in the literature nor between the participants but there are several associated terms and concepts: participatory decision-making, access to evidence-based information, autonomy, (peer) coaching and so on.

At the macro-level, patients are relatively well represented and involved. The discussion participants say that patient representatives and self-help groups have too little system knowledge for being engaged as equal partners in decision-making processes. There is a great potential for improving the communication between patients and doctors. A concrete idea for realizing patient participation is the use of guides (for example Case Manager).

As the main barriers for a comprehensive implementation, the discussion participants named financial disincentives and underfinancing the “speaking medicine”, rigid hierarchies in care organizations, and a lack of communication training in the vocational education and training of medical staff.