Involvement of patient representatives in clinical practice guideline development: a qualitative study

Background: The involvement of patient representatives in the development process of clinical practice guidelines is accepted as an international standard. However, there is no consensus on the optimal methods to be used. We explored how patient advocates experienced their role while being actively involved in guideline development. Methods: From November 2012 to January 2013 problem-centred interviews were conducted with eleven patient representatives from Germany who were involved in evidence-based guideline development. The interviews were analysed using the methods of Grounded Theory. Results: Three main categories were derived which patient representatives perceived as the most important prerequisites for active participation in guideline development groups: knowledge, endorsement and adopting the role. Knowledge combined with an explicit clarification of the role of the patient representative seems to have a positive impact on the adoption of the specific role in a guideline developing group. Conclusion: Our study indicates how active involvement of patient representatives in guideline development processes can be optimised. Initially, the role of the patient representative should be explicitly clarified; and courses offering methodological support should be provided. The informative value of the study is limited by the small number of interviews. Therefore, further studies are needed.