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

Ethics, Privacy, and Legal Issues (622) Participatory Medicine & E-Patients (878) Electronic Health Records (1331) Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (703) Secondary Use of Clinical Data for Research and Surveillance (475) Safety and Error Prevention in Health (243)

Published on in Vol 23, No 2 (2021): February

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/22744, first published .
Opening a “Can of Worms” to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study

Opening a “Can of Worms” to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study

Opening a “Can of Worms” to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study

Authors of this article:

Olivia Lounsbury1, 2 Author Orcid Image ;   Lily Roberts1 Author Orcid Image ;   Jonathan R Goodman1 Author Orcid Image ;   Philippa Batey3 Author Orcid Image ;   Lenny Naar3 Author Orcid Image ;   Kelsey M Flott1 Author Orcid Image ;   Anna Lawrence-Jones1 Author Orcid Image ;   Saira Ghafur4 Author Orcid Image ;   Ara Darzi1 Author Orcid Image ;   Ana Luisa Neves1, 5 Author Orcid Image
Article Authors Cited by (27) Tweetations (4) Metrics

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  16. Goodman J, Milne R. Signalling and rich trustworthiness in data-driven healthcare: an interdisciplinary approach. Data & Policy 2024;6 View
  17. Laverty L, Jones E, Peek N, Oswald M, Bozentko K, Atwood S, van der Veer S. The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing. Big Data & Society 2024;11(4) View
  18. Dees M, Alkir-Yurt S, Olthuis G, Braspenning J. Determining implementation issues of open notes in primary care: a focus group study. BMC Primary Care 2025;26(1) View
  19. Niño de Rivera S, Zhao Y, Omollo S, Eslami S, Benda N, Sharma Y, Reading Turchioe M, Sharko M, Dugdale L, Masterson Creber R. Integrating public preferences to overcome racial disparities in research: findings from a US survey on enhancing trust in research data-sharing practices. JAMIA Open 2025;8(3) View
  20. Minartz P, Vondeberg C, Obert L, Bleck C, Hemming B, Vöcking M, Ose C, Znotka M, Cürlis D, Karrenbrock A, Oehmichen F, Heistermann P, Kuske S. Experiencing digital technologies: The importance of feeling safe in healthcare – A qualitative participatory design. Das Gesundheitswesen 2025 View
  21. 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
  22. Kober S, Koch M, Ludwig A, Franczyk B. Building a Data Trust: Fine(r)-Grained Attribute Based Policy Machine. Procedia Computer Science 2025;270:572 View
  23. Goodman J, Costa A, Milne R. Trust and Perceived Trustworthiness in Health-Related Data Sharing Among UK Adults: Cross-Sectional Survey. Journal of Medical Internet Research 2025;27:e83533 View

Books/Policy Documents

  1. Druedahl L, Kälvemark Sporrong S. The Law and Ethics of Data Sharing in Health Sciences. View
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