2020
Engaging heart failure patients from a clinical data research network: A survey on willingness to participate in different types of research.
Choi Y, López J, Meeker D, Ohno-Machado L, Kim K. Engaging heart failure patients from a clinical data research network: A survey on willingness to participate in different types of research. AMIA Annual Symposium Proceedings 2020, 2019: 305-312. PMID: 32308823, PMCID: PMC7153117.Peer-Reviewed Original ResearchConceptsClinical Data Research NetworkHeart failure patientsLarge cohort studyResearch participationResearch NetworkCohort studyFailure patientsOne-time surveyPatient cohortObservational studyPatient motivationWeight controlSignificant associationClinical researchPatientsPrecision medicineHealth dataRecruitment effortsNational effortsActivity interestsSurgeryCohort
2019
Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research
Kim J, Kim H, Bell E, Bath T, Paul P, Pham A, Jiang X, Zheng K, Ohno-Machado L. Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research. JAMA Network Open 2019, 2: e199550. PMID: 31433479, PMCID: PMC6707015, DOI: 10.1001/jamanetworkopen.2019.9550.Peer-Reviewed Original Research
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
Sharing my health data: a survey of data sharing preferences of healthy individuals.
Bell E, Ohno-Machado L, Grando M. Sharing my health data: a survey of data sharing preferences of healthy individuals. AMIA Annual Symposium Proceedings 2014, 2014: 1699-708. PMID: 25954442, PMCID: PMC4419941.Peer-Reviewed Original Research