ReviewJournal of medical ethics2022
Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.
Review in Journal of medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 149 papers, 3 of them syntheses 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
149 citing papers in PubMed, 3 syntheses or guidelines pooled it, 286 citations in OpenAlex.
- Patient Concerns Regarding Artificial Intelligence Applications in Health Care: Systematic Review and Meta-Synthesis Based on Social Ecological Theory.Journal of medical Internet research · 2026Pooled it
- A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.Public understanding of science (Bristol, England) · 2024Pooled it
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Return of participant-level clinical trial results to participants: pilot of a simplified centralised approach.BMJ open · 2024Trial
- 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
- Perceptions, attitudes, and concerns of underrepresented groups regarding the use of big data in children and young people's healthcare research - A systematic literature review.PLOS digital health · 2026Article
- Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study.Journal of Parkinson's disease · 2026Article
- Exploring needs and priorities in digital health management for rare disease patients and their caregivers: A mixed-methods study.PLOS digital health · 2026Article
- Feasibility, comprehension and applicability of broad consent in the emergency department: an exploratory mixed-methods study.Journal of medical ethics · 2026Article
- Consent to Medical Data Processing Among Adult Primary Care Patients: Associations with Vaccination Behaviour and Healthcare Trust.Healthcare (Basel, Switzerland) · 2026Article
- Understanding public perspectives of prehospital trauma research: A qualitative community engagement study on consent and blood transfusion.Transfusion · 2026Article
- Operationalizing transparency regarding the use of health data for research: a cross-sectional survey of citizens' perspectives.BMC public health · 2026Article
- Patient Perceptions and Acceptance of Blockchain-Based Health Data Sharing in Oncology: Cross-Sectional Survey.JMIR formative research · 2026Article
- Justice in the governance of personal health data spaces: stakeholder perspectives in Belgium.BMC medical ethics · 2026Article
- Pediatric Clinical Images Without Consent: A Governance Gap in the Long-Term Reuse of Health Data in Digital Health Ecosystems.Journal of medical Internet research · 2026Article
- Older adults' perspectives on big data use in hip fracture research: a qualitative study.BMC geriatrics · 2026Article
- Patient Perspectives on the Use of Artificial Intelligence in Malignant Melanoma Diagnosis.Dermatology practical & conceptual · 2026Article
- Implementing broad consent for research with routinely collected clinical data and residual biosamples in a cancer hospital: using mixed methods approach to evaluate consent rates and patients' perspectives.BMC medical ethics · 2026Article
- A multi-stakeholder perspective on barriers to the adoption of personalized prevention in European healthcare systems.Frontiers in public health · 2026Article
- A survey of public attitudes toward secondary research governance oversight: Evidence from Singapore's TRUST platform.International journal of population data science · 2026Article
89 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 4 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionInternational sharing of health data opens the door to the study of the so-called 'Big Data', which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a 'social license' is identifying the views patients and the public may hold with regard to data sharing for health research.
methodsWe performed a narrative review of the empirical evidence addressing patients' and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients' and public attitudes were extracted from selected references and thematically categorised.
resultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread-though conditional-support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.
conclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.
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.