Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/7763, first published .
Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens’ Juries

Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens’ Juries

Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens’ Juries

Journals

  1. Sheehan M, Friesen P, Balmer A, Cheeks C, Davidson S, Devereux J, Findlay D, Keats-Rohan K, Lawrence R, Shafiq K. Trust, trustworthiness and sharing patient data for research. Journal of Medical Ethics 2021;47(12):e26 View
  2. Fontana G, Ghafur S, Torne L, Goodman J, Darzi A. Ensuring that the NHS realises fair financial value from its data. The Lancet Digital Health 2020;2(1):e10 View
  3. Degeling C, Carter S, van Oijen A, McAnulty J, Sintchenko V, Braunack-Mayer A, Yarwood T, Johnson J, Gilbert G. Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries. BMC Medical Ethics 2020;21(1) View
  4. Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Research 2019;3:6 View
  5. Ford E, Oswald M. Response to commentaries on ‘Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK’. Journal of Medical Ethics 2020;46(6):384 View
  6. Ford E, Oswald M, Hassan L, Bozentko K, Nenadic G, Cassell J. Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK. Journal of Medical Ethics 2020;46(6):367 View
  7. Hassan L, Dalton A, Hammond C, Tully M. A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England. Public Understanding of Science 2020;29(7):702 View
  8. Hindi A, Schafheutle E, Jacobs S. Applying a whole systems lens to the general practice crisis: cross-sectional survey looking at usage of community pharmacy services in England by patients with long-term respiratory conditions. BMJ Open 2019;9(11):e032310 View
  9. Ford E, Boyd A, Bowles J, Havard A, Aldridge R, Curcin V, Greiver M, Harron K, Katikireddi V, Rodgers S, Sperrin M. Our data, our society, our health: A vision for inclusive and transparent health data science in the United Kingdom and beyond. Learning Health Systems 2019;3(3) View
  10. McCormick N, Hamilton C, Koehn C, English K, Stordy A, Li L. Canadians’ views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey. CMAJ Open 2019;7(2):E203 View
  11. Grundstrom C, Korhonen O, Väyrynen K, Isomursu M. Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study. JMIR Medical Informatics 2020;8(3):e16102 View
  12. Tully M, Bernsten C, Aitken M, Vass C. Public preferences regarding data linkage for research: a discrete choice experiment comparing Scotland and Sweden. BMC Medical Informatics and Decision Making 2020;20(1) View
  13. Tully M, Hassan L, Oswald M, Ainsworth J. Commercial use of health data—A public “trial” by citizens' jury. Learning Health Systems 2019;3(4) View
  14. Hutchings E, Loomes M, Butow P, Boyle F. A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency. Systematic Reviews 2020;9(1) View
  15. Hutchings E, Loomes M, Butow P, Boyle F. A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent. Systematic Reviews 2021;10(1) View
  16. van der Veer S, Riste L, Cheraghi-Sohi S, Phipps D, Tully M, Bozentko K, Atwood S, Hubbard A, Wiper C, Oswald M, Peek N. Trading off accuracy and explainability in AI decision-making: findings from 2 citizens’ juries. Journal of the American Medical Informatics Association 2021;28(10):2128 View
  17. Köngeter A, Schickhardt C, Jungkunz M, Bergbold S, Mehlis K, Winkler E. Patients’ Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer. Journal of Medical Internet Research 2022;24(8):e37665 View
  18. Thabrew H, Aljawahiri N, Kumar H, Bowden N, Milne B, Prictor M, Jordan V, Breedvelt J, Shepherd T, Hetrick S. ‘As Long as It's Used for Beneficial Things’: An Investigation of non-Māori, Māori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI). Journal of Empirical Research on Human Research Ethics 2022;17(4):471 View
  19. Jones L, Nelder J, Fryer J, Alsop P, Geary M, Prince M, Cardinal R. Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK. BMJ Open 2022;12(4):e057579 View
  20. McKay F, Williams B, Prestwich G, Treanor D, Hallowell N. Public governance of medical artificial intelligence research in the UK: an integrated multi-scale model. Research Involvement and Engagement 2022;8(1) View
  21. Lysaght T, Ballantyne A, Toh H, Lau A, Ong S, Schaefer O, Shiraishi M, van den Boom W, Xafis V, Tai E. Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore. Journal of Personalized Medicine 2021;11(9):921 View
  22. Knowles S, Allen D, Donnelly A, Flynn J, Gallacher K, Lewis A, McCorkle G, Mistry M, Walkington P, Brunton L. Participatory codesign of patient involvement in a Learning Health System: How can data‐driven care be patient‐driven care?. Health Expectations 2022;25(1):103 View
  23. Hemphill L, Schöpke-Gonzalez A, Panda A. Comparative sensitivity of social media data and their acceptable use in research. Scientific Data 2022;9(1) View
  24. 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
  25. Dixon W, van der Veer S, Ali S, Laidlaw L, Dobson R, Sudlow C, Chico T, MacArthur J, Doherty A. Charting a Course for Smartphones and Wearables to Transform Population Health Research. Journal of Medical Internet Research 2023;25:e42449 View
  26. Braunack-Mayer A, Fabrianesi B, Street J, O'Shaughnessy P, Carter S, Engelen L, Carolan L, Bosward R, Roder D, Sproston K. Sharing Government Health Data With the Private Sector: Community Attitudes Survey. Journal of Medical Internet Research 2021;23(10):e24200 View
  27. Dong Y, Mun S, Wang Y. A blockchain-enabled sharing platform for personal health records. Heliyon 2023;9(7):e18061 View
  28. Rahdar S, Montazeri M, Mirzaee M, Ahmadian L. The relationship between e-health literacy and information technology acceptance, and the willingness to share personal and health information among pregnant women. International Journal of Medical Informatics 2023;178:105203 View
  29. Varhol R, Norman R, Randall S, Man Ying Lee C, Trevenen L, Boyd J, Robinson S, Watts C. Public preference on sharing health data to inform research, health policy and clinical practice in Australia: A stated preference experiment. PLOS ONE 2023;18(11):e0290528 View
  30. 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: A systematic review (Preprint). Journal of Medical Internet Research 2023 View
  31. Afraz A, Montazeri M, Shahrbabaki M, Ahmadian L, Jahani Y. The viewpoints of parents of children with mental disorders regarding the confidentiality and security of their children’s information in the Iranian national electronic health record system. International Journal of Medical Informatics 2024;183:105334 View