ArticleJournal of comparative effectiveness research2017
Stakeholders' views on data sharing in multicenter studies.
Article in Journal of comparative effectiveness research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
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.
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Who cites it
26 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Distributed Quasi-Poisson regression algorithm for modeling multi-site count outcomes in distributed data networks.Journal of biomedical informatics · 2022Pooled it
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Empirical research related to the ethics of pragmatic clinical trials: A scoping review.Learning health systems · 2026Article
- Distributed cross-learning for equitable federated models - privacy-preserving prediction on data from five California hospitals.Nature communications · 2025Article
- Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law.Asian bioethics review · 2024Article
- Article
- 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
- Patients' knowledge, preferences, and perspectives about data protection and data control: an exploratory survey.Frontiers in pharmacology · 2023Article
- Privacy-preserving estimation of an optimal individualized treatment rule: a case study in maximizing time to severe depression-related outcomes.Lifetime data analysis · 2022Article
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- A blank check or a global public good? A qualitative study of how ethics review committee members in Colombia weigh the risks and benefits of broad consent for data and sample sharing during a pandemic.PLOS global public health · 2022Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- An agenda-setting paper on data sharing platforms: euCanSHare workshop.Open research Europe · 2021Article
- Society for Immunotherapy of Cancer clinical and biomarkers data sharing resource document: Volume I-conceptual challenges.Journal for immunotherapy of cancer · 2020Article
- Resilience of clinical text de-identified with "hiding in plain sight" to hostile reidentification attacks by human readers.Journal of the American Medical Informatics Association : JAMIA · 2020Article
- Inverse probability weighted Cox model in multi-site studies without sharing individual-level data.Statistical methods in medical research · 2020Article
- Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide.BMC medical research methodology · 2020Article
- Privacy-protecting multivariable-adjusted distributed regression analysis for multi-center pediatric study.Pediatric research · 2020Article
- Analytic and Data Sharing Options in Real-World Multidatabase Studies of Comparative Effectiveness and Safety of Medical Products.Clinical pharmacology and therapeutics · 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
9 authors.
Funding
Abstract
aimTo understand stakeholders' views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods. MATERIALS &
methodsSemistructured interviews with five US stakeholder groups.
resultsWe completed 11 interviews, involving patients (n = 15), researchers (n = 10), Institutional Review Board and regulatory staff (n = 3), multicenter research governance experts (n = 2) and healthcare system leaders (n = 4). Perceptions of the benefits and value of research were the strongest influences toward data sharing; cost and security risks were primary influences against sharing. Privacy-protecting methods that share summary-level data were acknowledged as being appealing, but there were concerns about increased cost and potential loss of research validity.
conclusionStakeholders were open to data sharing in multicenter studies that offer value and minimize security risks.
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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.