Hyeoneui Kim|Elizabeth A. Bell|Jihoon Kim|Amy M. Sitapati|Joe Ramsdell|Claudiu Farcas|Dexter Friedman|Stephanie Feudjio Feupe|Lucila Ohno?Machado
iCONCUR: informed consent for clinical data and bio-sample use for research
University of California, San Diego|University of California, San Diego|University of California, San Diego|University of California, San Diego|University of California, San Diego|University of California, San Diego|University of California, San Diego|University of California, San Diego|University of California, San Diego|Southern California Clinical and Translational Science Institute
implementation patient preferences use electronic health records research traditionally limited identifiable data tiered econsent use deidentified data traditionally deemed unnecessary impractical implementation clinical settingswe developed webbased tiered informed consent tool called informed consent clinical data biosample use research iconcur honors granular patient preferences use electronic health record data research piloted tool 4 outpatient clinics academic medical centerof patients offered access iconcur 394 agreed participate study among 126 patients accessed website modify records according data category data recipient majority consented share data specimens researchers willingness share greater among participants human immunodeficiency virus hiv clinic internal medicine clinics number items declined higher forprofit institution recipients overall participants willing share demographics body measurements least willing share family history financial data participants indicated granular choices data sharing appropriate liked informed using data purposes well outcomes researchthis study suggests tiered electronic informed consent system workable solution respects patient preferences increases satisfaction significantly affect participation research