Patient Representatives at the Federal State Level in Germany - Results of a Quantitative Survey Regarding the Educational Needs of Patient Representatives

Objectives: During the last decades patient and public involvement has gained more and more political approval. An important milestone regarding collective patient interests was the Statutory Health Insurance Modernisation Act in 2004 ( 140f SGB V). No systematic research has been conducted regarding the situation of patient representatives at the federal state level as yet. The aim of the following study is to close this gap, focusing on educational needs of patient representatives. Methods: After screening the literature we identified and discussed relevant aspects of patient participation in a focus group of 7 patient representatives. Based on these findings a standardised questionnaire was developed in cooperation with scientists and patient representatives. We sent the written questionnaire to 504 patient representatives at the federal state level. The survey was targeted at patient representatives who currently participate or have in the past participated in a committee at federal state level according to 140f SGB V. Results: A total of 184 completed questionnaires was returned for an overall response rate of 36.5%. Most respondents felt poorly prepared for their role and regard a compulsory preparation course as necessary. Patient representatives want to be an active part in the decision-making process of the committee meetings. They report educational needs on different topics and they are willing to close these gaps. For the future, patient representatives expect increasing significance of collective participation. Conclusion: The results can be used to develop educational programmes for patient representatives in order to qualify them for the best possible performance of their tasks. Furthermore the results can provide a scientific basis for political discussions and for reasoning capacity building of patient representatives.