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 challe...
| Published in: | Health Expectations Vol. 29; no. 4; pp. 1 - 15 |
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| Main Authors: | , , , , |
| Format: | research tables/charts Journal Article |
| Published: |
Wiley-Blackwell
Aug2026
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=196480457&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 196480457 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Aug2026 vid: 29 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 196480457 196480457 196480457 10.1111/hex.70789 196480457 ppf: 1 ppct: 14 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Evaluating the Quality and Impact of Online Patient Forums in Genomic Data Governance. aug: au: Eric, Apondo Christoph, Schickhardt Züger, Andrea Winkler, Eva C. Katja, Mehlis affil: Faculty of Medicine, Institute for Medical and Data Ethics, Heidelberg University, Heidelberg, Germany sug: subj: Rare Diseases Familial and Genetic Neoplasms Familial and Genetic Genetic Risk Score Genomics Data Management Administration Data Quality Patient Attitudes Patient Participation Health Policy Policy Making Archives Human Male Female Adult Middle Age Aged Germany Qualitative Studies Comparative Studies Purposive Sample Stakeholder Participation Questionnaires Thematic Analysis Descriptive Statistics Data Analysis Software Wilcoxon Signed Rank Test Health Information Management Health Information Systems Funding Source Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Male Female ab: 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. Patient or Public Contribution: Two patient co‐researchers were involved in all phases of the study as part of the study team. Before their recruitment, they were informed about the study's goals, its planned duration, their roles, and the expected time demands for each role. They were involved in the following tasks: development of the study protocol, development of a recruitment strategy, development of the discussion guide and information materials for the participants, development of the programme of the DFs, including decisions about the length of the individual sessions, as well as the number and the length of the breaks. They were also involved in preparing the manuscript of the white paper. The patient co‐researchers were remunerated for their work in the study. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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