Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK
Open accessAbstract
Background: Use of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical policy. Methods: Eighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns. Results: Jurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing. Conclusions: Informed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data.
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ChatGPT's advanced features, such as natural language processing and machine learning, may pose privacy risks.
“In addition, ChatGPT’s advanced features, such as natural language processing and machine learning, may pose privacy risks [35,36].”
From Ethical Considerations of Using ChatGPT in Health Care (2023) · cites this paper as [36]
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- Authors
- Ford, E., Oswald, M., Hassan, L., Bozentko, K., Nenadic, G., & Cassell, J.
- Affiliations
- Brighton and Sussex Medical School (GB)
- University of Manchester (GB)
- Corresponding author
- Ford, Elizabeth
- Venue
- Journal of Medical Ethics
- Publisher
- BMJ
- Published
- 2020-05-26
- Volume
- 46
- Issue
- 6
- Pages
- 367-377
- ISSN
- 0306-6800 (ISSN-L)
- 1473-4257
- PMC
- PMC7279205
- OpenAlex
- W3028781881
- Cited by
- 59
- References
- 51
- Citations by year
- 2026: 4 · 2025: 14 · 2024: 8 · 2023: 14 · 2022: 7 · 2021: 9 · 2020: 3
- FWCI
- 6.17
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Journal of Medical Ethics (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Sussex Research Online (University of Sussex) (submittedVersion, cc-by)
- HighWire Press Open Archive (submittedVersion)
- Research Explorer (The University of Manchester) (submittedVersion, other-oa)
- Funders
- Engineering and Physical Sciences Research Council
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- electronic health records, research data sharing, citizen juries, public attitudes, patient privacy, routinely collected health data, informed consent, health research ethics
- MeSH terms
- United Kingdom, Humans, State Medicine, Privacy, Information Dissemination, Electronic Health Records
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