2016
iCONCUR: informed consent for clinical data and bio-sample use for research
Kim H, Bell E, Kim J, Sitapati A, Ramsdell J, Farcas C, Friedman D, Feupe S, Ohno-Machado L. iCONCUR: informed consent for clinical data and bio-sample use for research. Journal Of The American Medical Informatics Association 2016, 24: 380-387. PMID: 27589942, PMCID: PMC5391727, DOI: 10.1093/jamia/ocw115.Peer-Reviewed Original ResearchConceptsPatient preferencesClinical dataHuman immunodeficiency virus clinicInternal medicine clinicElectronic health record dataHealth record dataAcademic medical centerElectronic health recordsDe-identified dataOutpatient clinicMedicine clinicFamily historyMedical CenterInformed Consent ToolClinical settingClinicHealth recordsRecord dataInformed consent systemPatientsConsent toolRecipientsConsentE-consentParticipants
2014
pSCANNER: patient-centered Scalable National Network for Effectiveness Research
Ohno-Machado L, Agha Z, Bell D, Dahm L, Day M, Doctor J, Gabriel D, Kahlon M, Kim K, Hogarth M, Matheny M, Meeker D, Nebeker J, team T, Resnic F, Khodyakov D, Armstead L, Nagler T, Morley S, Anderson N, Cooper D, Phillips D, Heber D, Li Z, Ong M, Patel A, Zachariah M, Burns J, Daniels L, Doan S, Farcas C, Germann-Kurtz R, Jiang X, Kim H, Paul P, Taras H, Tremoulet A, Wang S, Zhu W, Berman D, Rizk-Jackson A, D’Arcy M, Kesselman C, Knight T, Pearlman L, Heidenreich P, Rifkin D, Stepnowsky C, Zamora T, DuVall S, Frey L, Scehnet J, Sauer B, Facelli J, Gouripeddi R, Denton J, FitzHenry F, Fly J, Messina V, Minter F, Nookala L, Sullivan H, Speroff T, Westerman D. pSCANNER: patient-centered Scalable National Network for Effectiveness Research. Journal Of The American Medical Informatics Association 2014, 21: 621-626. PMID: 24780722, PMCID: PMC4078293, DOI: 10.1136/amiajnl-2014-002751.Peer-Reviewed Original ResearchConceptsInitial use caseCommon data modelPatient Centered Outcomes Research InstituteHealth information exchange dataComputing infrastructuresFederated networkUse casesDistributed systemData modelComputation modelExchange dataPatient-powered research networksCommunity-based outpatient clinicsNetworkCongestive heart failureOutcomes Research InstituteEffectiveness researchAsynchronous modeHealth services researchersKawasaki diseaseHeart failureOutpatient clinicVA InformaticsAmbulatory careNational network