Jul 2026· Health Expectations· Vol 29· 0 citations· 59 references
Medicine
TL;DR
A series of online DFs that were conducted to explore how patients can be involved in the governance of a genomic data archive (GDA), the German Human Genome‐Phenome Archive (GHGA) were evaluated.
Abstract
There is consensus that patients' perspectives should be considered in decisions about health data. Deliberative forums (DFs) have become a common tool for patient involvement (PI) in health policy development. However, translating deliberative outcomes into policy decisions poses challenges. There has recently been interest in conducting DFs online, yet few online DFs have been evaluated for quality or policy impact. We evaluated a series of online DFs that were conducted to explore how patients can be involved in the governance of a genomic data archive (GDA), the German Human Genome‐Phenome Archive (GHGA).
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PurposeTo describe the development of - and outcomes from - an institution-level initiative supporting access to innovative genetic medicines information and opportunities.
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