ArticleJournal of the American Medical Informatics Association : JAMIA
Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.
Article in Journal of the American Medical Informatics Association : JAMIA. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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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
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled it
- Feasibility and utility of Point-of-Care electronic clinical data capture in Uganda's healthcare system: a qualitative study.Journal of the American Medical Informatics Association : JAMIA · 2023Article
- 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
- Genomic Common Data Model for Seamless Interoperation of Biomedical Data in Clinical Practice: Retrospective Study.Journal of medical Internet research · 2019Article
- Factors affecting willingness to share electronic health data among California consumers.BMC medical ethics · 2017Article
- Software-Enabled Distributed Network Governance: The PopMedNet Experience.EGEMS (Washington, DC) · 2016Article
- A system to build distributed multivariate models and manage disparate data sharing policies: implementation in the scalable national network for effectiveness research.Journal of the American Medical Informatics Association : JAMIA · 2015Article
- Comparison of consumers' views on electronic data sharing for healthcare and research.Journal of the American Medical Informatics Association : JAMIA · 2015Article
- Development of a web service for analysis in a distributed network.EGEMS (Washington, DC) · 2014Article
- Examining the potential of information technology to improve public insurance application processes: enrollee assessments from a concurrent mixed method analysis.Journal of the American Medical Informatics Association : JAMIAArticle
- Changing the research landscape: the New York City Clinical Data Research Network.Journal of the American Medical Informatics Association : JAMIAArticle
- pSCANNER: patient-centered Scalable National Network for Effectiveness Research.Journal of the American Medical Informatics Association : JAMIAArticle
- Query Health: standards-based, cross-platform population health surveillance.Journal of the American Medical Informatics Association : JAMIAArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
There is currently limited information on best practices for the development of governance requirements for distributed research networks (DRNs), an emerging model that promotes clinical data reuse and improves timeliness of comparative effectiveness research. Much of the existing information is based on a single type of stakeholder such as researchers or administrators. This paper reports on a triangulated approach to developing DRN data governance requirements based on a combination of policy analysis with experts, interviews with institutional leaders, and patient focus groups. This approach is illustrated with an example from the Scalable National Network for Effectiveness Research, which resulted in 91 requirements. These requirements were analyzed against the Fair Information Practice Principles (FIPPs) and Health Insurance Portability and Accountability Act (HIPAA) protected versus non-protected health information. The requirements addressed all FIPPs, showing how a DRN's technical infrastructure is able to fulfill HIPAA regulations, protect privacy, and provide a trustworthy platform for research.
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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.