Abstract
BACKGROUND: Patient organisations are increasingly calling for a participatory approach to health research. In the "KundiG - Klug und digital durch das Gesundheitswesen" project, the perspective of chronically ill people was included in the development of a training programme for digital health literacy (dGK). The aim of this work is to show the personal effort involved in the participatory development of a training programme and the prerequisites for this. METHODS: During the project period (April 2021 to March 2023), a basic concept was developed by the researchers and continuously refined in a structured participatory process with regard to content, depth of topics, procedure, didactics and course materials. A participation model was created for this purpose. A formative evaluation took place as part of eight pilot courses. RESULTS: A total of 20 people were involved in the working groups and the evaluation, including 6 from organised self-help, 3 from BARMER and 11 from the Hannover Medical School. The participatory collaboration was labour intensive and tightly scheduled, meaning that not all members were able to participate to the same extent. The result was an internet-based training programme that received positive feedback and suggestions for improvement from the participants in the pilot courses. The result was a 15-hour online course to promote dGK, a 300-page course manual and six digital, accessible booklets. DISCUSSION: Participation meant the active involvement of all participants in the entire process, a high number of appointments, the consideration of different perspectives and a constant endeavour to reach a consensus. Prior training of the participants could be helpful in future projects. The roll-out of the programme and continuous evaluation in the context of self-help are in preparation.