Apondo Eric

Evaluating the Quality and Impact of Online Patient Forums in Genomic Data Governance

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).