GHGA opens dialogue with patients

In April 2022, we reported on the PaGODa study, in which we aim to establish sustained and effective patient participation within the management and oversight of GHGA. The study is a participatory study involving two full-day online deliberative forums with stakeholders (patients with cancer or rare diseases or individuals with genetic predispositions to these diseases).

We were able to recruit a total of 29 interested parties. Divided into two groups, the forums took place on Saturday, July 9 and July 23, between 09:00 and 16:00. After a greeting by Prof. Winkler we started with the morning program. This consisted of small group discussions and two lectures: an introduction to the German Human Genome Phenome Archive (by Dr. J. Eufinger) and a lecture on Informed Consent (by A. Bruns, PhD). After lunch, we came together in a plenary session. Here, participants summarised the results of the small group discussions, explored topics in more depth (e.g., consent, data access, and participation in committees within GHGA), and addressed differences of opinion.

The forum was very educational for our team. We were delighted to hear so many different perspectives and concrete ideas and suggestions for patient participation. We received positive feedback from many participants regarding the organisation and the content of the forum and the knowledge gained from the event. Particularly encouraging was the feedback from some participants that they could imagine working together in further phases of the project. 

We are looking forward to the evaluation of the study, as well as follow-up events with the participants and the implementation of the results.