Published on in Vol 20 , No 3 (2018) :March
This is a member publication of Institute of Population Health, Centre for Health Informatics, University of Manchester
Preprints (earlier versions) of this paper are
available at
https://preprints.jmir.org/preprint/7763, first published
.

Journals
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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: A Scoping Review (Preprint). Journal of Medical Internet Research 2022 View
- 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
- 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