Toward the development of data governance standards for using clinical free-text data in health research: position paper

Jones, Kerina H, Ford, Elizabeth M, Lea, Nathan, Griffiths, Lucy J, Hassan, Lamiece, Heys, Sharon, Squires, Emma and Nenadic, Goran (2020) Toward the development of data governance standards for using clinical free-text data in health research: position paper. Journal of Medical Internet Research, 22 (6). a16760 1-16. ISSN 1438-8871

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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.

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.

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.

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.

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.

Item Type: Article
Keywords: ethical, free-text data, information governance, legal, public engagement, social implications, Data Analysis, Humans, Reference Standards, Text Messaging
Schools and Departments: Brighton and Sussex Medical School > Primary Care and Public Health
SWORD Depositor: Mx Elements Account
Depositing User: Mx Elements Account
Date Deposited: 23 Sep 2021 10:41
Last Modified: 23 Feb 2022 11:54

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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
ASTRODEM: Using astrophysics to close the 'diagnosis gap' for dementia in UK general practice.G1895WELLCOME TRUST202133/Z/16/Z