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Patient Access to Health Information. James J. Cimino, M.D. Columbia University Presented to National Committee on Vital and Health Statistics Chicago, Illinois July 24, 2002. Overview. Patient Clinical Information System (PatCIS)
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Patient Access to Health Information James J. Cimino, M.D. Columbia University Presented to National Committee on Vital and Health Statistics Chicago, Illinois July 24, 2002
Overview • Patient Clinical Information System (PatCIS) • Myocardial Infarction Health Education Aimed at Rapid Therapy (MI-HEART) • What we learned • Standards issues • Where do we go from here?
Patient Clinical Information System (PatCIS) • National Information Infrastructure Program (NLM) • Give patients access to their records • See what happens
PatCIS Architecture • Front end to New York Presbyterian Hospital’s Clinical Data Repository • Address security issues • No attempt to create “patient view” • Added educational resources, guidelines and infobuttons
PatCIS Evaluation • Questionnaires • Usage Logs • Interviews
PatCIS Results • 13 patients followed for 36 months (223 patient months) • Technical barriers not an issue
PatCIS Results • 13 patients followed for 36 months (223 patient months) • Technical barriers not an issue • Overwhelming usage was lab results • Little interest in educational materials • Improved patients’ understanding of their conditions • Improved doctor-patient interactions
MI-HEART • National Heart Attack Alert Program (NLM and NHLBI) • Decrease time from onset of MI symptoms to calling 911 • Explore use of Web as educational medium • Explore use of clinical data for customization
MI-HEART Protocol • Three patient groups • Control: standard paper-based materials • Non-tailored: standard Web-based messages • Tailored: customized Web-based messages • On-line questionnaires • Baseline • One month • Three months • Examine • Risk assessment • Knowledge • Self efficancy
MI-HEART Results • 120+ subjects • Data collection and analysis ongoing • Web-based groups improved on all scores compared to paper-based • Tailored group showed sustained improvement compared to other groups
What We Learned • Patients can handle the technology • Patients want their results • Patients want to collaborate with physicians • EMR+Web can be an effective educational medium
Standards Issues • Browsers • Patient identifiers • Terminology for patient data • Access to high quality resources • Guideline structure
Where do we go from here? • Identify agenda for involving patients • Infrastucture • Standards • Identification • Confidentiality • Access • Education • Data • Content