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Patient involvement can help to focus research and healthcare to the needs of the patients. In this episode Anne Müller relates her experiences in this field.

In a recently published white paper, we summarise the results of the PaGODA-Study and present a concept with concrete steps for implementation of meaningful patient involvement in the governance of GHGA.

In early March, GHGA continued its dialogue with patients on the implementation of effective patient participation in GHGA. The consensus-building meeting focused on a recruitment strategy for patient representatives and outreach objectives.

In early July, GHGA met with patients to understand their perspective on GHGA governance, particularly in terms of genomic data sharing. Based on these discussions a concrete strategy for patient participation will be developed.

Within a participatory study, GHGA will hold deliberative democratic forums exploring the patients’ perspectives and which concrete roles patients could take within GHGA governance.