Patient Access to Health Information James J. Cimino, M.D. Columbia University Presented to National Committee on Vital and Health Statistics Chicago,

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

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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