ArticleBMJ (Clinical research ed.)2003
Patients' consent preferences for research uses of information in electronic medical records: interview and survey data.
Article in BMJ (Clinical research ed.), 2003. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 64 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
64 citing papers in PubMed, 1 synthesis or guideline pooled 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
- 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
- Recruiting patients to medical research: double blind randomised trial of "opt-in" versus "opt-out" strategies.BMJ (Clinical research ed.) · 2005Trial
- Sharing data matters: exploring the attitudes of older consumers on an emerging healthy ageing data platform using electronic health records for research.BMJ health & care informatics · 2025Article
- Placing conditions on sharing general practice data for research: Recommendations from two community juries.International journal of population data science · 2025Article
- 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
- Supporting Patients in Managing Electronic Health Records and Biospecimens Consent for Research: Insights from a Mixed-Methods Usability Evaluation of the iAGREE Portal.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2024Article
- 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
- Patient consent preferences on sharing personal health information during the COVID-19 pandemic: "the more informed we are, the more likely we are to help".BMC medical ethics · 2022Article
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
- US Privacy Laws Go Against Public Preferences and Impede Public Health and Research: Survey Study.Journal of medical Internet research · 2021Article
- The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.BMC medical ethics · 2021Article
- Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020Article
- "Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore.BMC medical ethics · 2020Article
- Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder.Disability and health journal · 2020Article
- 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
- In response to Ballantyne and Schaefer's 'Consent and the ethical duty to participate in health data research'.Journal of medical ethics · 2019Article
- Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment.International journal of population data science · 2018Article
4 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo assess patients' preferred method of consent for the use of information from electronic medical records for research.
designInterviews and a structured survey of patients in practices with electronic medical records.
settingFamily practices in southern Ontario, Canada.
participants123 patients: 17 were interviewed and 106 completed a survey.
main outcome measuresPatients' opinions and concerns on use of information from their medical records for research and their preferences for method of consent.
resultsMost interviewees were willing to allow the use of their information for research purposes, although the majority preferred that consent was sought first. The seeking of consent was considered an important element of respect for the individual. Most interviewees made little distinction between identifiable and anonymised data. Research sponsored by private insurance firms generated the greatest concern, and research sponsored by foundation the least. Sponsorship by drug companies evoked negative responses during interview and positive responses in the survey.
conclusionsPatients are willing to allow information from their medical records to be used for research, but most prefer to be asked for consent either verbally or in writing.
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.