Should free text data in electronic medical records be shared for research? A citizens’ jury study in the United Kingdom

Ford, Elizabeth, Oswald, Malcolm, Hassan, Lamiece, Bozentko, Kyle, Nenadic, Goran and Cassell, Jackie (2020) Should free text data in electronic medical records be shared for research? A citizens’ jury study in the United Kingdom. Journal of Medical Ethics, 46. pp. 367-377. ISSN 0306-6800

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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.

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.

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.

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.

Item Type: Article
Keywords: Stakeholder participation, medical text, natural language processing, text mining, privacy, healthcare
Schools and Departments: Brighton and Sussex Medical School > Primary Care and Public Health
Subjects: B Philosophy. Psychology. Religion > BJ Ethics
R Medicine > RA Public aspects of medicine
R Medicine > RA Public aspects of medicine > RA0001 Medicine and the state. Including medical statistics, medical economics, provisions for medical care, medical sociology
Depositing User: Elizabeth Ford
Date Deposited: 13 Feb 2020 09:25
Last Modified: 21 Feb 2022 12:26

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Project NameSussex Project NumberFunderFunder Ref
A citizens' jury study to understand whether, and under what conditions, the public would accept medical free text being used for researchG2433EPSRC-ENGINEERING & PHYSICAL SCIENCES RESEARCH COUNCILUnset