University of Sussex
Ford et al 2021 Benefits of free text review.pdf (955.8 kB)

The potential of research drawing on clinical free text to bring benefits to patients in the United Kingdom: a systematic review of the literature

Download (955.8 kB)
journal contribution
posted on 2023-06-09, 23:02 authored by Elizabeth FordElizabeth Ford, Keegan Curlewis, Emma Squires, Lucy J Griffiths, Robert Stewart, Kerina H Jones
Background: The analysis of clinical free text from patient records for research has potential to contribute to the medical evidence base but access to clinical free text is frequently denied by data custodians who perceive that the privacy risks of data-sharing are too high. Engagement activities with patients and regulators, where views on the sharing of clinical free text data for research have been discussed, have identified that stakeholders would like to understand the potential clinical benefits that could be achieved if access to free text for clinical research were improved. We aimed to systematically review all UK research studies which used clinical free text and report direct or potential benefits to patients, synthesizing possible benefits into an easy to communicate taxonomy for public engagement and policy discussions. Methods: We conducted a systematic search for articles which reported primary research using clinical free text, drawn from UK health record databases, which reported a benefit or potential benefit for patients, actionable in a clinical environment or health service, and not solely methods development or data quality improvement. We screened eligible papers and thematically analyzed information about clinical benefits reported in the paper to create a taxonomy of benefits. Results: We identified 43 papers and derived five themes of benefits: health-care quality or services improvement, observational risk factor-outcome research, drug prescribing safety, case-finding for clinical trials, and development of clinical decision support. Five papers compared study quality with and without free text and found an improvement of accuracy when free text was included in analytical models. Conclusions: Findings will help stakeholders weigh the potential benefits of free text research against perceived risks to patient privacy. The taxonomy can be used to aid public and policy discussions, and identified studies could form a public-facing repository which will help the health-care text analysis research community better communicate the impact of their work.


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


Publication status

  • Published

File Version

  • Published version


Frontiers in Digital Health




Frontiers Media



Page range


Article number


Department affiliated with

  • Primary Care and Public Health Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date


First Open Access (FOA) Date


First Compliant Deposit (FCD) Date


Usage metrics

    University of Sussex (Publications)


    No categories selected



    Ref. manager