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

Preprints (earlier versions) of this paper are available at, 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


  1. Burton L, Rush K, Smith M, Davis S, Rodriguez Echeverria P, Suazo Hidalgo L, Görges M. Empowering Patients Through Virtual Care Delivery: Qualitative Study With Micropractice Clinic Patients and Health Care Providers. JMIR Formative Research 2022;6(4):e32528 View
  2. Neves A, Burgers J. Digital technologies in primary care: Implications for patient care and future research. European Journal of General Practice 2022;28(1):203 View
  3. McCarthy M, Gillies K, Rousseau N, Wade J, Gamble C, Toomey E, Matvienko-Sikar K, Sydes M, Dowling M, Bryant V, Biesty L, Houghton C. Qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance. HRB Open Research 2023;6:10 View
  4. Mikkelsen J, Sørensen N, Merrild C, Jensen M, Thomsen J. Patient perspectives on data sharing regarding implementing and using artificial intelligence in general practice – a qualitative study. BMC Health Services Research 2023;23(1) View
  5. Schmitt T, Cosgrove S, Pajić V, Papadopoulos K, Gille F. What does it take to create a European Health Data Space? International commitments and national realities. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 2023;179:1 View
  6. Lammons W, Silkens M, Hunter J, Shah S, Stavropoulou C. Centering Public Perceptions on Translating AI Into Clinical Practice: Patient and Public Involvement and Engagement Consultation Focus Group Study. Journal of Medical Internet Research 2023;25:e49303 View
  7. Cervera de la Cruz P, Shabani M. Conceptualizing fairness in the secondary use of health data for research: A scoping review. Accountability in Research 2023:1 View
  8. Johnson A, Bouvette M, Rangu N, Morley T, Schultz A, Torgerson T, Vassar M. Data-Sharing Across Otolaryngology: Comparing Journal Policies and Their Adherence to the FAIR Principles. Annals of Otology, Rhinology & Laryngology 2024;133(1):105 View
  9. Baines R, Stevens S, Austin D, Anil K, Bradwell H, Cooper L, Maramba I, Chatterjee A, Leigh S. Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review. Journal of Medical Internet Research 2024;26:e50421 View
  10. Tino C, Becker A, Pereira B, Corrêa L, Soares M, Nascimento-e-Silva D. Ethical, legal, and information management aspects in the context of patient safety. Revista de Gestão e Secretariado 2024;15(1):167 View
  11. Greaves K, King A, Bourne Z, Welsh J, Morgan M, Tolosa M, Bonner C, Stanton T, Fryer M, Korda R. Participant characteristics and reasons for non-consent to health information linkage for research: experiences from the ATHENA COVID-19 study. BMC Medical Informatics and Decision Making 2024;24(1) View
  12. Papadopoulos K, von Wyl V, Gille F. What is public trust in national electronic health record systems? A scoping review of qualitative research studies from 1995 to 2021. DIGITAL HEALTH 2024;10 View
  13. Minartz P, Aumann C, Vondeberg C, Kuske S. Feeling safe in the context of digitalization in healthcare: a scoping review. Systematic Reviews 2024;13(1) View
  14. Siette J, Campbell C, Adam P, Harris C. Exploring the usability of the virtual reality module LEAF CAFÉ: a qualitative think-aloud study. BMC Geriatrics 2024;24(1) View

Books/Policy Documents

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