For the greater good? Patient and public attitudes to use of medical free text data in research

Ford, Elizabeth, Stockdale, Jessica, Jackson, Richard and Cassell, Jackie (2017) For the greater good? Patient and public attitudes to use of medical free text data in research. International Population Data Linkage Network (IPDLN) 2016 Conference, Swansea, Wales, 24-26 August 2016. Published in: International Journal of Population Data Science. 1 (1) 229. Swansea University ISSN 2399-4908

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Abstract

Objectives: Electronic health records (EHRs) contain rich information for understanding health conditions and their treatment. A large proportion of clinical information in EHRs is stored in narrative free text. This text is currently under-utilised due to privacy concerns, as it is harder to remove patient identifiers from text than from structured data. Automated de-identification of clinical text is now possible using heuristic or machine-learning-based systems.
We conducted a review of the literature on patient and public understanding and attitudes towards the use of patients’ medical data for research, particularly seeking views on free text. The aim was to inform and develop a governance framework for the de-identification and use of medical free text for research, and to instigate a wider discussion on the topic.

Approach: We undertook a systematic search in Web of Science and ScienceDirect with terms such as “public attitudes” and “electronic health records”. 3480 results were sifted by title, abstract and full text. Forty-two articles were retained for review, these reported on studies of patient and public perceptions, understanding and attitudes towards the use of patients’ medical data in research.

Results: Research participants were positively inclined towards information in records being used in research “for the greater good”. However, no clear patterns by age, ethnicity, education level or SES emerged as to who was more favourable to data use.

Participants generally trusted health care professionals and public sector researchers with de-identified medical data, whereas government health agencies and commercial entities were not trusted. No explicitly feared harms associated with data use were articulated. However the general objections appeared to be a dislike of personal data being exploited for commercial gain, and a dislike of personal data being moved around and used without personal knowledge or consent.

Notably the use of EHR medical text for research did not emerge as a specific patient/public concern. De-identification was important to participants but text was not identified as a distinct privacy risk.

Conclusion: This review demonstrates that transparency about data usage, and working “for the greater good” rather than financial gain, appear to be the most important public concerns to be addressed when using patients’ medical data.

Governance frameworks for using EHRs must now be enhanced to provide for the use of medical text. This will involve informing both regulators and the public about the current capabilities of automated de-identification, and developing other assurances to safeguard patients’ privacy.

Item Type: Conference Proceedings
Additional Information: This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Keywords: patient data, e-health records, electronic health records, medical ethics, public perceptions, public attitudes
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 > RA0418 Medicine and society. Social medicine. Medical sociology
R Medicine > RA Public aspects of medicine > RA0418 Medicine and society. Social medicine. Medical sociology
Depositing User: Jessica Stockdale
Date Deposited: 20 Apr 2017 15:21
Last Modified: 28 Sep 2017 14:18
URI: http://sro.sussex.ac.uk/id/eprint/67446
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