Jones et al 2020 TexGov.pdf (498.04 kB)
Toward the development of data governance standards for using clinical free-text data in health research: position paper
journal contribution
posted on 2023-06-10, 01:06 authored by Kerina H Jones, Elizabeth FordElizabeth Ford, Nathan Lea, Lucy J Griffiths, Lamiece Hassan, Sharon Heys, Emma Squires, Goran NenadicBackground: Clinical free-text data (eg, outpatient letters or nursing notes) represent a vast, untapped source of rich information that, if more accessible for research, would clarify and supplement information coded in structured data fields. Data usually need to be deidentified or anonymized before they can be reused for research, but there is a lack of established guidelines to govern effective deidentification and use of free-text information and avoid damaging data utility as a by-product. Objective: This study aimed to develop recommendations for the creation of data governance standards to integrate with existing frameworks for personal data use, to enable free-text data to be used safely for research for patient and public benefit. Methods: We outlined data protection legislation and regulations relating to the United Kingdom for context and conducted a rapid literature review and UK-based case studies to explore data governance models used in working with free-text data. We also engaged with stakeholders, including text-mining researchers and the general public, to explore perceived barriers and solutions in working with clinical free-text. Results: We proposed a set of recommendations, including the need for authoritative guidance on data governance for the reuse of free-text data, to ensure public transparency in data flows and uses, to treat deidentified free-text data as potentially identifiable with use limited to accredited data safe havens, and to commit to a culture of continuous improvement to understand the relationships between the efficacy of deidentification and reidentification risks, so this can be communicated to all stakeholders. Conclusions: By drawing together the findings of a combination of activities, we present a position paper to contribute to the development of data governance standards for the reuse of clinical free-text data for secondary purposes. While working in accordance with existing data governance frameworks, there is a need for further work to take forward the recommendations we have proposed, with commitment and investment, to assure and expand the safe reuse of clinical free-text data for public benefit.
Funding
ASTRODEM: Using astrophysics to close the 'diagnosis gap' for dementia in UK general practice.; G1895; WELLCOME TRUST; 202133/Z/16/Z
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 Internet ResearchISSN
1438-8871Publisher
JMIR PublicationsExternal DOI
Issue
6Volume
22Page range
1-16Article number
a16760Event location
CanadaDepartment affiliated with
- Primary Care and Public Health Publications
Full text available
- Yes
Peer reviewed?
- Yes
Legacy Posted Date
2021-09-23First Open Access (FOA) Date
2021-09-23First Compliant Deposit (FCD) Date
2021-09-22Usage metrics
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