ReviewHealth policy (Amsterdam, Netherlands)2019
A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.
Review in Health policy (Amsterdam, Netherlands), 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 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
33 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Ethical issues in biomedical research using electronic health records: a systematic review.Medicine, health care, and philosophy · 2021Pooled it
- Justice in the governance of personal health data spaces: stakeholder perspectives in Belgium.BMC medical ethics · 2026Article
- What patients value in data reuse for oncology research: a multi-stakeholder qualitative study to inform the European Health Data Space implementation in Belgium and beyond.Archives of public health = Archives belges de sante publique · 2026Article
- The Ethics of Leveraging Routinely Collected Patient Data for AI Development: Mixed Methods Study.Journal of medical Internet research · 2026Article
- Public perceptions of health data sharing for artificial intelligence research: a qualitative focus group study in the UK.BMJ digital health & AI · 2026Article
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Lessons for a learning health system: Effectively communicating to patients about research with their health information and biospecimens.Learning health systems · 2025Article
- Exploring barriers and ethical challenges to medical data sharing: perspectives from Chinese researchers.BMC medical ethics · 2024Article
- The European Health Data Space can be a boost for research beyond borders.Nature medicine · 2024Article
- Article
- Landscape analysis of available European data sources amenable for machine learning and recommendations on usability for rare diseases screening.Orphanet journal of rare diseases · 2024Article
- Attitude towards consent-free research use of personal medical data in the general German population.Heliyon · 2024Article
- Article
- Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.Journal of medical Internet research · 2023Article
- Survey of Public Attitudes toward the Secondary Use of Public Healthcare Data in Korea.Healthcare informatics research · 2023Article
- The European health data space: Too big to succeed?Health policy (Amsterdam, Netherlands) · 2023Article
- What prevents us from reusing medical real-world data in research.Scientific data · 2023Article
- Patient perspectives on data sharing regarding implementing and using artificial intelligence in general practice - a qualitative study.BMC health services research · 2023Article
- Personal Health Record for Personalizing Research and Care Trajectories: A Proof of Concept Pilot with Diet in Inflammatory Bowel Diseases.Journal of personalized medicine · 2023Article
- Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.Journal of medical Internet 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
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Health data are used for still more purposes, and policies are enacted to facilitate data reuse within the European Union. This literature synthesis explores attitudes among people living in the European Union towards the use of health data for purposes other than treatment. Our findings indicate that while a majority hold positive attitudes towards the use of health data for multiple purposes, the positive attitudes are typically conditional on the expectation that data will be used to further the common good. Concerns evolve around the commercialisation of data, data security and the use of data against the interests of the people providing the data. Studies of these issues are limited geographically as well as in scope. We therefore identify a need for cross-national exploration of attitudes among people living in the European Union to inform future policies in health data governance.
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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.