ArticleJournal of the American Medical Informatics Association : JAMIA
Alternatives to project-specific consent for access to personal information for health research: what is the opinion of the Canadian public?
Article in Journal of the American Medical Informatics Association : JAMIA. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 2 of them syntheses that pooled it.
What it found
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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
45 citing papers in PubMed, 2 syntheses or guidelines pooled it, 92 citations in OpenAlex.
- A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.Systematic reviews · 2020Pooled it
- The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.Translational behavioral medicine · 2018Pooled it
- Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial.Journal of the American Medical Informatics Association : JAMIA · 2019Trial
- Trial
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Investigating people's attitudes towards participating in longitudinal health research: an intersectionality-informed perspective.International journal for equity in health · 2023Article
- Citizens, Research Ethics Committee Members and Researchers' Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems.Journal of empirical research on human research ethics : JERHRE · 2021Article
- A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.Systematic reviews · 2021Article
- Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries.BMC medical ethics · 2020Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- Article
- The Potential of Blockchain Technology for Health Information Exchange: Experimental Study From Patients' Perspectives.Journal of medical Internet research · 2019Article
- Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems.BMC medical ethics · 2019Article
- Parental opinions regarding consent for observational research of no or minimal risk in the pediatric intensive care unit.Journal of intensive care · 2019Article
- Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens' Juries.Journal of medical Internet research · 2018Article
- Patient preferences toward an interactive e-consent application for research using electronic health records.Journal of the American Medical Informatics Association : JAMIA · 2018Article
- Stakeholders' views on data sharing in multicenter studies.Journal of comparative effectiveness research · 2017Article
- Stepping Up to the Plate: An Agenda for Research and Policy Action on Electronic Medical Records in Canadian Primary Healthcare.Healthcare policy = Politiques de sante · 2016Article
- A survey of patient perspectives on the research use of health information and biospecimens.BMC medical ethics · 2016Article
- Participant views on consent in cancer genetics research: preparing for the precision medicine era.Journal of community genetics · 2016Article
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
No grant is acknowledged in the PubMed record.
Abstract
objectivesThis study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research.
designThe authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada. MEASUREMENTS: We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data.
resultsSupport was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income.
conclusionsMost of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.
Indexed as
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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.