ArticleBMC medical informatics and decision making2019
Responsible data sharing in a big data-driven translational research platform: lessons learned.
Article in BMC medical informatics and decision making, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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
11 citing papers in PubMed.
- Bridging Research, Policy, and Practice: Advancing Evidence-Informed Approaches for Dementia Care and Prevention: an expert review by the Health Policy Professional Interest Area from ISTAART.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- Big data for neuroscience in the context of predictive, preventive, and personalized medicine.The EPMA journal · 2025Review
- Decades in the Making: The Evolution of Digital Health Research Infrastructure Through Synthetic Data, Common Data Models, and Federated Learning.Journal of medical Internet research · 2024Article
- Proxies of Trustworthiness: A Novel Framework to Support the Performance of Trust in Human Health Research.Journal of bioethical inquiry · 2024Article
- OHDSI-compliance: a set of document templates facilitating the implementation and operation of a software stack for real-world evidence generation.Frontiers in medicine · 2024Article
- Article
- Retinal Scans and Data Sharing: The Privacy and Scientific Development Equilibrium.Mayo Clinic proceedings. Digital health · 2023Review
- Data sharing in neurodegenerative disease research: challenges and learnings from the innovative medicines initiative public-private partnership model.Frontiers in neurology · 2023Review
- Patients' and Publics' Preferences for Data-Intensive Health Research Governance: Survey Study.JMIR human factors · 2022Article
- The social licence for data-intensive health research: towards co-creation, public value and trust.BMC medical ethics · 2021Review
- Sharing Is Caring-Data Sharing Initiatives in Healthcare.International journal of environmental research and public health · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundTo foster responsible data sharing in health research, ethical governance complementary to the EU General Data Protection Regulation is necessary. A governance framework for Big Data-driven research platforms will at least need to consider the conditions as specified a priori for individual datasets. We aim to identify and analyze these conditions for the Innovative Medicines Initiative's (IMI) BigData@Heart platform.
methodsWe performed a unique descriptive case study into the conditions for data sharing as specified for datasets participating in BigData@Heart. Principle investigators of 56 participating databases were contacted via e-mail with the request to send any kind of documentation that possibly specified the conditions for data sharing. Documents were qualitatively reviewed for conditions pertaining to data sharing and data access.
resultsQualitative content analysis of 55 relevant documents revealed overlap on the conditions: (1) only to share health data for scientific research, (2) in anonymized/coded form, (3) after approval from a designated review committee, and while (4) observing all appropriate measures for data security and in compliance with the applicable laws and regulations.
conclusionsDespite considerable overlap, prespecified conditions give rise to challenges for data sharing. At the same time, these challenges inform our thinking about the design of an ethical governance framework for data sharing platforms. We urge current data sharing initiatives to concentrate on: (1) the scope of the research questions that may be addressed, (2) how to deal with varying levels of de-identification, (3) determining when and how review committees should come into play, (4) align what policies and regulations mean by "data sharing" and (5) how to deal with datasets that have no system in place for data sharing.
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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.