[Methods of patient involvement in the development of guidelines - a systematic review]

Involving patients or patient-representatives in the development of guidelines is widely recommended. The expected benefits of patient involvement include an increase in the relevance and acceptability of the guidelines. So far there has been no systematic review of patient involvement in the development process of the German AMWF S3 and nursing guidelines and no description of the recommendations made by guideline-developing organisations and the scientific literature concerning the methods of patient involvement.

A systematic search was performed (July 2013) to identify AWMF S3 and nursing guidelines, manuals for guideline development, and scientific literature on methods of patient involvement. The following data were extracted: the methods of patient involvement from the guidelines, and all recommendations on a successful patient involvement from the manuals of guideline development and from the scientific literature.

A total of 124 AWMF S3 and 18 nursing guidelines, six manuals of guideline development and ten scientific publications were included. Patient representatives were involved in the development process in 71 out of 142 guidelines (n=63 AWMF S3 and n=8 nursing guidelines). The manuals for guideline development included recommendations for a global involvement of patient representatives and recommendations for specific stages of the development process. In the scientific publications, active and early involvement has been identified as a key element to a successful involvement of patient representatives.

In the German AMWF and nursing guidelines, patient involvement is currently not an established standard. This could be improved by including mandatory rules for patient involvement in the manuals for guideline development. More research is needed on the effects of patient involvement on the content and applicability of guidelines.