Evidence map›Paper›PMID 40978336›Full record

ReviewAI and ethics2025

What is the patient re-identification risk from using de-identified clinical free text data for health research?

Elizabeth Ford, Simon Pillinger, Robert Stewart, Kerina Jones, Angus Roberts, Arlene Casey, Katie Goddard, Goran Nenadic

Abstract readReview
In one paragraph

Review in AI and ethics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Elizabeth FordBrighton and Sussex Medical School, Brighton, UK.
Simon PillingerAkrivia Health, Oxford, UK.
Robert StewartKing's College London, London, UK.
Kerina JonesSwansea University, Swansea, UK.
Angus RobertsKing's College London, London, UK.
Arlene CaseyUniversity of Edinburgh, Edinburgh, UK.
Katie GoddardBrighton and Sussex Medical School, Brighton, UK.
Goran NenadicUniversity of Manchester, Manchester, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Important clinical information is recorded in free text in patients' records, notes, letters and reports in healthcare settings. This information is currently under-used for health research and innovation. Free text requires more processing for analysis than structured data, but processing natural language at scale has recently advanced, using large language models. However, data controllers are often concerned about patient privacy risks if clinical text is allowed to be used in research. Text can be de-identified, yet it is challenging to quantify the residual risk of patient re-identification. This paper presents a comprehensive review and discussion of elements for consideration when evaluating the risk of patient re-identification from free text. We consider (1) the reasons researchers want access to free text; (2) the accuracy of automated de-identification processes, identifying best practice; (3) methods previously used for re-identifying health data and their success; (4) additional protections put in place around health data, particularly focussing on the UK where "Five Safes" secure data environments are used; (5) risks of harm to patients from potential re-identification and (6) public views on free text being used for research. We present a model to conceptualise and evaluate risk of re-identification, accompanied by case studies of successful governance of free text for research in the UK. When de-identified and stored in secure data environments, the risk of patient re-identification from clinical free text is very low. More health research should be enabled by routinely storing and giving access to de-identified clinical text data.

Indexed as

Clinical textData governance; ConfidentialityData scienceHealth dataNatural language processingPrivacy

Identifiers

PMID40978336
PMCPMC12449363

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.