ArticleJournal of medical ethics2004
Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study.
Article in Journal of medical ethics, 2004. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 59 papers, 2 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
59 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.BMC medical ethics · 2016Pooled it
- "Let's get the best quality research we can": public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study.BMC medical research methodology · 2013Pooled it
- Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose.Journal of oncology practice · 2015Trial
- Trial
- Firefighter Occupational Health and Safety Data Privacy: An Analysis of Statutory, Regulatory, and Contractual Governance Mechanisms.New solutions : a journal of environmental and occupational health policy : NS · 2026Article
- Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform.International journal of population data science · 2025Article
- Health data sharing attitudes towards primary and secondary use of data: a systematic review.EClinicalMedicine · 2024Article
- Community views on the secondary use of general practice data: Findings from a mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness.BMC medical ethics · 2023Article
- Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences.Journal of the American Medical Informatics Association : JAMIA · 2023Article
- Perspectives of Youths on the Ethical Use of Artificial Intelligence in Health Care Research and Clinical Care.JAMA network open · 2023Article
- Patients' and Publics' Preferences for Data-Intensive Health Research Governance: Survey Study.JMIR human factors · 2022Article
- Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.BMC public health · 2022Article
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.BMC medical ethics · 2021Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- "Just tell me what's going on": The views of parents of children with genetic conditions regarding the research use of their child's electronic health record.Journal of the American Medical Informatics Association : JAMIA · 2020Article
- A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.Health policy (Amsterdam, Netherlands) · 2019Review
- In response to Ballantyne and Schaefer's 'Consent and the ethical duty to participate in health data research'.Journal of medical ethics · 2019Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesRecent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.
methods49 members of the public and four non-medical members of local community health councils in South Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.
resultsAmong focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.
conclusionsThis exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues.
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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.