ArticleBMC medical ethics2017
Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population.
Article in BMC medical ethics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Science and engineering ethics · 2022Pooled it
- Evaluation of a mobile application to decrease opioid misuse in patients undergoing cesarean section: a randomized controlled trial.BMC pregnancy and childbirth · 2024Trial
- Analysis of compliance and language use in broad informed consent forms in international multicenter clinical trials after the implementation of the 2018 common rule.BMC medical ethics · 2026Article
- [Nationally standardized broad consent in practice: initial experiences, current developments, and critical assessment].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework.Global bioethics = Problemi di bioetica · 2024Article
- A Mobile App for Postoperative Pain Management Among Older Veterans Undergoing Total Knee Arthroplasty: Mixed Methods Feasibility and Acceptability Pilot Study.JMIR perioperative 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
- Health data privacy through homomorphic encryption and distributed ledger computing: an ethical-legal qualitative expert assessment study.BMC medical ethics · 2022Article
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 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
- Meta-consent for the secondary use of health data within a learning health system: a qualitative study of the public's perspective.BMC medical ethics · 2021Article
- Ethical Issues in Patient Data Ownership.Interactive journal of medical research · 2021Article
- Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good.BMC medical ethics · 2021Article
- Genetic Data, Two-Sided Markets and Dynamic Consent: United States Versus France.Science and engineering ethics · 2019Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent or not at all. This study investigates whether meta consent preferences can be successfully elicited by a smartphone application in the adult Danish population.
methodsA smartphone app was developed for the elicitation of meta consent preferences. An invitation to use the app was distributed to a stratified, representative sample of the Danish adult population. The meta consent choices, the use of the app, user experience data, and demographic data were logged and analysed statistically using IBM SPSS version 20.
resultsOf 1000 potential respondents 221 used the app. One hundred eighty-eight of the respondents were female and 103 male. The age range was 19 to 79 years with an average of 51 years (SD 16). Most users indicate 1) that they find the choices they are asked to make easy to understand (>75% find it 'Easy' or 'Very easy'), 2) that the application is easy to use (>75% find it 'Easy' or 'Very easy'), and 3) that this kind of choice should be offered to people (89% find it 'Absolutely' or 'Somewhat' important).
conclusionsIt is possible to collect meta consent preferences in the general, adult population using a smartphone app.
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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.