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
2018
DataMed – an open source discovery index for finding biomedical datasets
Chen X, Gururaj A, Ozyurt B, Liu R, Soysal E, Cohen T, Tiryaki F, Li Y, Zong N, Jiang M, Rogith D, Salimi M, Kim H, Rocca-Serra P, Gonzalez-Beltran A, Farcas C, Johnson T, Margolis R, Alter G, Sansone S, Fore I, Ohno-Machado L, Grethe J, Xu H. DataMed – an open source discovery index for finding biomedical datasets. Journal Of The American Medical Informatics Association 2018, 25: 300-308. PMID: 29346583, PMCID: PMC7378878, DOI: 10.1093/jamia/ocx121.Peer-Reviewed Original ResearchIngestion pipelineBiomedical datasetsSearch enginesBiomedical domainAdvanced natural language processingRelevant datasetsUser-entered queryData discovery systemUnified metadata modelData ingestion pipelinesNatural language processingOpen-source packageRetrieval engineTerminology servicesMetadata modelMetadata informationDiscovery systemData reuseDataMedBenchmark datasetsBiomedical dataData indexAverage precisionLanguage processingSource package
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