This paper is in the following e-collection/theme issue:

Focus Groups and Qualitative Research for Human Factors Research (1220) Ethics, Privacy, and Legal Issues (617) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (997) Secondary Use of Clinical Data for Research and Surveillance (474) Big Data (307) Policy (74) Health Information Exchange (146)

Published on in Vol 9, No 3 (2022): Jul-Sep

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/36797, first published .
Patients’ and Publics’ Preferences for Data-Intensive Health Research Governance: Survey Study

Patients’ and Publics’ Preferences for Data-Intensive Health Research Governance: Survey Study

Patients’ and Publics’ Preferences for Data-Intensive Health Research Governance: Survey Study

Authors of this article:

Sam H A Muller1 Author Orcid Image ;   Ghislaine J M W van Thiel1 Author Orcid Image ;   Marilena Vrana2 Author Orcid Image ;   Menno Mostert1 Author Orcid Image ;   Johannes J M van Delden1 Author Orcid Image
Article Authors Cited by (10) Tweetations (10) Metrics

Journals

  1. Cumyn A, Ménard J, Barton A, Dault R, Lévesque F, Ethier J. Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review. Journal of Medical Internet Research 2023;25:e45002 View
  2. Muller S, Mostert M, van Delden J, Schillemans T, van Thiel G. Learning accountable governance: Challenges and perspectives for data-intensive health research networks. Big Data & Society 2022;9(2) View
  3. Muller S, van Thiel G, Mostert M, van Delden J. Dynamic consent, communication and return of results in large-scale health data reuse: Survey of public preferences. DIGITAL HEALTH 2023;9 View
  4. Busch-Casler J, Radic M. Trust and Health Information Exchanges: Qualitative Analysis of the Intent to Share Personal Health Information. Journal of Medical Internet Research 2023;25:e41635 View
  5. Biasiotto R, Viberg Johansson J, Alemu M, Romano V, Bentzen H, Kaye J, Ancillotti M, Blom J, Chassang G, Hallinan D, Jónsdóttir G, Monasterio Astobiza A, Rial-Sebbag E, Rodríguez-Arias D, Shah N, Skovgaard L, Staunton C, Tschigg K, Veldwijk J, Mascalzoni D. Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries. Journal of Medical Internet Research 2023;25:e47066 View
  6. Clay I, Peerenboom N, Connors D, Bourke S, Keogh A, Wac K, Gur-Arie T, Baker J, Bull C, Cereatti A, Cormack F, Eggenspieler D, Foschini L, Ganea R, Groenen P, Gusset N, Izmailova E, Kanzler C, Leyens L, Lyden K, Mueller A, Nam J, Ng W, Nobbs D, Orfaniotou F, Perumal T, Piwko W, Ries A, Scotland A, Taptiklis N, Torous J, Vereijken B, Xu S, Baltzer L, Vetter T, Goldhahn J, Hoffmann S. Reverse Engineering of Digital Measures: Inviting Patients to the Conversation. Digital Biomarkers 2023:28 View
  7. Levites Strekalova Y, Wang X, Midence S, Quarshie A. Policy instruments for the governance of the social drivers of health data in clinical and research settings: a policy mapping brief. Frontiers in Public Health 2024;12 View
  8. Stark S, Schorr S, Pittelkow M, Strech D. Benefits and risks of health data reuse for healthcare providers: stakeholder perspectives from a qualitative interview study. BMC Health Services Research 2025;25(1) View
  9. Olsen Q, Dyda A, Woods L, Lobo E, Eden R, Krahe M, Richards B, Pather N, McGee L, Sullivan C, Pole J. Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis. npj Digital Medicine 2025;8(1) View
  10. Nilashi M, Abumalloh R, Keng Boon O, Tan G, Aw E, Cham T. Big data ethics: implications for organizational performance and business value. Management Decision 2025:1 View