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

BACKGROUND: 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). METHODS: We conducted two online DFs and a follow-up dialogue event with members of the cancer and rare diseases (RD) communities in Germany (n = 26). Evaluation was conducted using three approaches: (1) A pre-/post-survey that assessed the knowledge and opinions of the participants before and after the forums; (2) the OECD questionnaire for deliberative processes, which evaluates the design of the DFs and the deliberative experience from the participants' perspective, and (3) assessment of the pathway to impact of the DFs in terms of which deliberative outcomes the management of the GHGA committed to acting on as documented in a white paper, and which of these, at the time of writing, have been acted upon, or implemented as its governance policy. RESULTS: Eighteen participants (69%) completed the survey on knowledge and opinions. A Wilcoxon Signed-Rank Test indicated a statistically significant knowledge gain for all items in the knowledge category (p < 0.05). There was a significant change in one of the opinion items in the survey. A total of 24 participants (96%) completed the OECD survey; 21 participants (87.5%) reported that the deliberations and their outcome met their expectations. The participants made 14 recommendations for the PI policy of the GHGA. The GHGA management committed to 13 of the 14 recommendations from the DFs. These recommendations were incorporated into a white paper proposing a policy framework on PI in the governance of the GHGA. We identified 7 recommendations from the white paper that have been acted upon by the GHGA or implemented as part of its policy. CONCLUSIONS: Online DFs can achieve high deliberative quality and meaningfully influence decision-making about governance and policy development. Our findings demonstrate the feasibility of online patient participation in health data governance and offer empirically grounded insights for the translation of patient and public deliberation outcomes into policy-making and governance processes.