Online follow-up dialogue event on patient involvement in governance

Picture from Pixabay (Alexandra Koch)

We previously reported on two deliberative forums on patient involvement in the governance of GHGA, which were conducted in July 2022. The forums were evaluated qualitatively, and the findings summarized in a draft document, which was the basis of discussion in a consensus-building dialogue event on March 04, 2023. 17 of the initial 26 participants from the deliberative forums attended the dialogue event. GHGA was represented by members of its ethics, legal, communication and project coordination teams, as well as the directorate.

We were happy to receive concrete feedback on the draft document. More importantly, together with the participants, we were able to reach consensus on practical aspects of the implementation of meaningful and impactful patient involvement in GHGA. These included a resolution to establish a patient advisory board in GHGA, as well as decisions about a recruitment strategy for patient representatives and outreach objectives.

The deliberative forums and the dialogue event will be the basis of a White Paper on Patient Involvement in GHGA, which we will make publicly available in the coming weeks. They are also just the beginning of what we hope will be continued, active dialogue and collaboration between GHGA, patients, and patient organizations.