2020
The Data Tags Suite (DATS) model for discovering data access and use requirements
Alter G, Gonzalez-Beltran A, Ohno-Machado L, Rocca-Serra P. The Data Tags Suite (DATS) model for discovering data access and use requirements. GigaScience 2020, 9: giz165. PMID: 32031623, PMCID: PMC7006671, DOI: 10.1093/gigascience/giz165.Peer-Reviewed Original ResearchConceptsData accessData discovery toolsPrivacy of subjectsData use agreementsConfidential dataMetadata itemsData reuseMetadata schemaAutomated systemDiscovery toolTechnical systemsStandard wayUse agreementsAccessPrivacyMetadataSchemaUse requirementsReuseResearchersResearch dataSystemRequirementsInformationData
2013
Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders
Kim K, Browe D, Logan H, Holm R, Hack L, Ohno-Machado L. Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders. Journal Of The American Medical Informatics Association 2013, 21: 714-719. PMID: 24302285, PMCID: PMC4078279, DOI: 10.1136/amiajnl-2013-002308.Peer-Reviewed Original ResearchConceptsFair Information Practice PrinciplesTechnical infrastructureClinical data reuseGovernance requirementsTrustworthy platformData reuseHealth Insurance PortabilityHIPAA regulationsAccountability ActNetworkInsurance PortabilityHealth informationRequirementsInformationResearch NetworkPrivacyPortabilityBest practicesInfrastructurePlatformReuseDiverse stakeholdersTimeliness