medethics-2019-105472.full.pdf (480.65 kB)
Should free text data in electronic medical records be shared for research? A citizens’ jury study in the United Kingdom
Version 2 2023-06-12, 09:22
Version 1 2023-06-09, 20:36
journal contribution
posted on 2023-06-12, 09:22 authored by Elizabeth FordElizabeth Ford, Malcolm Oswald, Lamiece Hassan, Kyle Bozentko, Goran Nenadic, Jackie CassellBackground 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.
Funding
A citizens' jury study to understand whether, and under what conditions, the public would accept medical free text being used for research; G2433; EPSRC-ENGINEERING & PHYSICAL SCIENCES RESEARCH COUNCIL
History
Publication status
- Published
File Version
- Published version
Journal
Journal of Medical EthicsISSN
0306-6800Publisher
BMJ Publishing GroupExternal DOI
Volume
46Page range
367-377Department affiliated with
- Primary Care and Public Health Publications
Full text available
- No
Peer reviewed?
- Yes
Legacy Posted Date
2020-02-13First Open Access (FOA) Date
2020-05-26First Compliant Deposit (FCD) Date
2020-02-12Usage metrics
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