ArticleDigital health
Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.
Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 32 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
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders' Perspectives: Systematic Review.Journal of medical Internet research · 2020Pooled it
- Expanding the boundaries of previously obtained informed consent in research: Views from participants in the Personalised Risk-based Mammascreening study.Health expectations : an international journal of public participation in health care and health policy · 2023Trial
- Trial
- From consent to participatory governance: The need for multi-stakeholder alignment in iPSC-based drug repurposing.Stem cell reports · 2026Article
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- Exploring patient motivations and preferences for medical data sharing with researchers: a simulation study using the iAgree platform.Journal of the American Medical Informatics Association : JAMIA · 2026Article
- 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
- Future-proofing genomic data and consent management: a comprehensive review of technology innovations.GigaScience · 2024Review
- Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort.European journal of human genetics : EJHG · 2024Article
- Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review.BMC medical ethics · 2023Article
- Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process.European journal of human genetics : EJHG · 2022Article
- Dynamic consent and personalised medicine.The Medical journal of Australia · 2022Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- A Smart Contract-Based Dynamic Consent Management System for Personal Data Usage under GDPR.Sensors (Basel, Switzerland) · 2021Article
- Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.Journal of personalized medicine · 2021Article
- Reflections on dynamic consent in biomedical research: the story so far.European journal of human genetics : EJHG · 2021Article
- 'CTRL': an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research.European journal of human genetics : EJHG · 2021Article
- Facing new challenges to informed consent processes in the context of translational research: the case in CARPEM consortium.BMC medical ethics · 2021Review
- [Ethical, legal and social issues publications on biobanks 2011-2018. A scoping review.]Revista espanola de salud publica · 2020Article
- Dwarna: a blockchain solution for dynamic consent in biobanking.European journal of human genetics : EJHG · 2020Article
Corrections and comments
- Erratum issued
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Web 2.0 technologies have enabled new methods of engagement, moving from static mono-directional sources of information to interactive user-led experiences. Use of Web 2.0 technologies for engagement is gaining momentum within the health sector however this is still in its infancy in biobanking research. This paper reports on findings from focus groups with biobank participants to gauge their views on a Web 2.0 dynamic consent interface. The findings from this study suggest that participants would welcome more interactive engagement with biobanks, and the opportunity to hear more about how their data and samples are being used in research. We propose that by adopting Web 2.0 tools for dynamic consent, we can move towards an 'Engagement 2.0' model whereby research participants have the opportunity for more interactive engagement with medical research, setting up a two-way communication channel between participants and researchers, for the benefit of both.
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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.