Patient Involvement

GHGA White Paper on patient involvement

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.

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Online follow-up dialogue event on patient involvement in governance

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.

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GHGA opens dialogue with patients

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.

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GHGA launches patient involvement efforts

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

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