ArticleBJGP open2024
NHS national data opt-outs: trends and potential consequences for health data research.
Article in BJGP open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Rapid Access Macular Screening and Evaluation: A Datasheet for a Dataset to Diagnose and Triage Macular Diseases.Ophthalmology science · 2026Article
- The Scale-Up of a Digital Health Intervention (Healthy Beginnings for HNEKids) Targeting the First 2000 Days: Protocol for a Randomized Controlled Trial.JMIR research protocols · 2025Article
- A user-driven consent platform for health data sharing in digital health applications.NPJ digital medicine · 2025Review
- Posttransplant diabetes mellitus and long-term outcomes after kidney transplantation in a steroid avoidance regimen: a cohort study.BMC nephrology · 2025Article
- The nature and extent of the literature on linked reproductive health datasets in the UK: a scoping review.International journal of population data science · 2025Article
- Challenges in understanding inequities in help-seeking for possible cancer symptoms.BMC global and public health · 2024Review
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Authors and funding
7 authors.
Funding
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Abstract
backgroundThe English NHS data opt-out allows people to prevent use of their health data for purposes other than direct care. In 2021, the number of opt-outs increased in response to government-led proposals to create a centralised pseudonymised primary care record database.
aimTo describe the potential impact of NHS national data opt-outs in 2021 on health data research. DESIGN &
settingWe conducted a descriptive analysis of opt-outs using publicly available data and the potential consequences on research are discussed.
methodTrends in opt-outs in England were described by age, sex, and region. Using a hypothetical study, we explored statistical and epidemiological implications of opt-outs.
resultsDuring the lead up to a key government-led deadline for registering opt-outs (from 31 May 2021-30 June 2021), 1 339 862 national data opt-outs were recorded; increasing the percentage of opt-outs in England from 2.77% to 4.97% of the population. Among females, percentage opt-outs increased by 83% (from 3.02% to 5.53%) compared with 76% in males (from 2.51% to 4.41%). Across age groups, the highest relative increase was among people aged 40-49 years, which rose from 2.89% to 6.04%. Considerable geographical variation was not clearly related to deprivation. Key research consequences of opt-outs include reductions in sample size and unpredictable distortion of observed measures of the frequency of health events or associations between these events.
conclusionOpt-out rates varied by age, sex, and place. The impact of this and variation by other characteristics on research is not quantifiable. Potential effects of opt-outs on research and consequences for health policies based on this research must be considered when creating future opt-out solutions.
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