Patient Access to Health Information

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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

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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?

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Patient Clinical Information System (PatCIS)

• National Information Infrastructure Program (NLM)
• Give patients access to their records
• See what happens

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PatCIS Architecture

• Front end to New York Presbyterian Hospitals
  Clinical Data Repository
• Address security issues
• No attempt to create patient view
• Added educational resources, guidelines and
  infobuttons

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PatCIS Evaluation

• Questionnaires
• Usage Logs
• Interviews

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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

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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

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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

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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

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What We Learned

• Patients can handle the technology
• Patients want their results
• Patients want to collaborate with physicians
• EMRWeb can be an effective educational medium

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Standards Issues

• Browsers
• Patient identifiers
• Terminology for patient data
• Access to high quality resources
• Guideline structure

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Where do we go from here?

• Identify agenda for involving patients
• Infrastucture
• Standards
• Identification
• Confidentiality
• Access
• Education
• Data
• Content