ArticleJMIR medical informatics2015
Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research.
Article in JMIR medical informatics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 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
51 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review.Journal of medical Internet research · 2023Pooled it
- Organoids: a systematic review of ethical issues.Stem cell research & therapy · 2022Pooled it
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- Dynamic Consent for Secondary Use of Health Data: Challenges and Opportunities Under European Law.JMIR medical informatics · 2026Review
- Autism data sharing: Benefits, challenges, and recommendations.PLOS digital health · 2026Review
- Assessing the Evolution and Influence of Medical Open Databases on Biomedical Research and Health Care Innovation: A 25-Year Perspective With a Focus on Privacy and Privacy-Enhancing Technologies.Journal of medical Internet research · 2026Article
- Comfort With Sharing Food Insecurity Risk for Clinical Care Among Individuals With and Without a Cancer History: Findings From a National Survey.AJPM focus · 2025Article
- Insights From the Development of a Dynamic Consent Platform for the Australians Together Health Initiative (ATHENA) Program: Interview and Survey Study.JMIR formative research · 2024Article
- Introducing dynamic consent for improved trust and privacy in research involving human biological material and associated data in South Africa.Frontiers in genetics · 2024Article
- Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review.BMC medical ethics · 2023Article
- Electronic informed consent criteria for research ethics review: a scoping review.BMC medical ethics · 2022Article
- Attitudes of Patients With Chronic Heart Failure Toward Digital Device Data for Self-documentation and Research in Germany: Cross-sectional Survey Study.JMIR cardio · 2022Article
- 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
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Reflections on dynamic consent in biomedical research: the story so far.European journal of human genetics : EJHG · 2021Article
- Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives.BMC medical ethics · 2021Review
- The anatomy of electronic patient record ethics: a framework to guide design, development, implementation, and use.BMC medical ethics · 2021Article
- Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review.BMC medical ethics · 2020Article
- Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.International journal of population data science · 2020Article
- All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent.Journal of medical Internet research · 2020Article
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.
Funding
Abstract
With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England's care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.
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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.