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