Trial reportBMJ open2022
Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.
Trial report in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
26 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- Pooled it
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- The 'Ghost in the Shell' of NHS Patient Data Policies: News Media on care.data's Haunting of the General Practice Data for Planning and Research.Sociology of health & illness · 2026Article
- Artificial intelligence for detection, grading, and prognostication in prostate cancer pathology: A scoping review.Histology and histopathology · 2026Article
- Perspectives on Health Data Sharing Among Patients With Somatic and Mental Health Diseases: Focus Group Study.Journal of medical Internet research · 2026Article
- Commercial or industrial use of mental health data for research: primer and best-practice guidelines from the DATAMIND patient/public Lived Experience Advisory Group.Frontiers in psychiatry · 2026Article
- Public perceptions of health data sharing for artificial intelligence research: a qualitative focus group study in the UK.BMJ digital health & AI · 2026Article
- Critical consideration towards broad consent by patient experts: results of a semi-structured interview study on the secondary use of medical data.BMC medical ethics · 2025Article
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Contribution and legacy: a qualitative study of older people's attitudes about sharing their routinely collected health data for research purposes in New Zealand.BMC medical ethics · 2025Article
- Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study.JMIR mental health · 2025Article
- Integrating public engagement to promote transparent data use in a new UK-wide birth cohort.International journal of population data science · 2025Article
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- NHS national data opt-outs: trends and potential consequences for health data research.BJGP open · 2024Article
- Article
- How to Elucidate Consent-Free Research Use of Medical Data: A Case for "Health Data Literacy".JMIR medical informatics · 2024Article
- Precision Medicine-Are We There Yet? A Narrative Review of Precision Medicine's Applicability in Primary Care.Journal of personalized medicine · 2024Review
- Machine learning in mental health and its relationship with epidemiological practice.Frontiers in psychiatry · 2024Article
- Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness.BMC medical ethics · 2023Article
- A comprehensive review of machine learning algorithms and their application in geriatric medicine: present and future.Aging clinical and experimental research · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
Abstract
objectivesUK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences. DESIGN/SETTING/INTERVENTIONS/OUTCOMES: Pre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data.
participantsOpen to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.
resultsMost (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19.
conclusionsSupport for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support. TRIAL REGISTRATION NUMBER: ISRCTN37444142.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.