Toward the Development of Data Governance Standards for Using Clinical Free-Text Data in Health Research: Position Paper
| Autor: | Lamiece Hassan, Sharon Heys, Kerina H. Jones, Elizabeth Ford, Nathan Lea, Emma Squires, Goran Nenadic, Lucy J Griffiths |
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| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
Data Analysis
Knowledge management social implications Health Informatics Context (language use) Commit lcsh:Computer applications to medicine. Medical informatics free-text data Data governance information governance public engagement 03 medical and health sciences 0302 clinical medicine Manchester Institute of Biotechnology Data Protection Act 1998 Humans Information governance 030212 general & internal medicine Public engagement legal Original Paper Text Messaging business.industry lcsh:Public aspects of medicine lcsh:RA1-1270 Reference Standards ResearchInstitutes_Networks_Beacons/manchester_institute_of_biotechnology Deidentification ethical Position paper lcsh:R858-859.7 Business 030217 neurology & neurosurgery |
| Zdroj: | Journal of Medical Internet Research, Vol 22, Iss 6, p e16760 (2020) Jones, K H, Ford, E M, Lea, N, Griffiths, L J, Hassan, L, Heys, S, Squires, E & Nenadic, G 2020, ' Toward the Development of Data Governance Standards for Using Clinical Free-Text Data in Health Research: Position Paper ', JOURNAL OF MEDICAL INTERNET RESEARCH . https://doi.org/10.2196/16760, https://doi.org/10.2196/16760 Journal of Medical Internet Research |
| ISSN: | 1438-8871 |
| Popis: | Background 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. |
| Databáze: | OpenAIRE |
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