1. Developing Evidence-Based Guidelines for Patient-Accessible Medical Records
Abstract
NIH R21 1 R21 CA133487-01A2
Start Date 12/1/09
PI, Christina Zarcadoolas, PhD, Mount Sinai School of Medicine, Sara J. Czaja, PhD, University
of Miami School of Medicine, Wendy Vaughon, MPH, Maxine L. Rockoff, PhD, Columbia
University Department of Biomedical Informatics, Joslyn Levy MPA
Despite the growing popularity of Personal Health Records (PHRs) and patient-oriented Electronic
Medical Records (EMRs), very little is known about the ability of patients with low average and low
literacy to read and use this information. Based on our preliminary analyses of exemplars we have
identified significant areas of complexity. Given that 50% of the adult population reads at the 8th
grade level and lower (NALS) (Kirsch et al., 1993; (NAAL), Nielsen-Bohlman, 2004), we can assume
that many aspects of these tools are “high-barrier” and hard to read and use. The Mount Sinai School
of Medicine’s Department of Community and Preventive Medicine and the University of Miami School
of Medicine’s Department of Psychiatry and Behavioral Sciences, in collaboration with the New York
City Department of Health and Mental Hygiene (DOHMH), propose to study the readability and
usability of patient-oriented EMRs. The targeted health domain will be cancer prevention and
management.
This proposed project is particularly timely and relevant because DOHMH, as part of a $27 million
Mayoral initiative to improve the quality and efficiency of health care in New York City, is supporting
the adoption and use of an EMR primarily among providers who care for patients who live in areas of
New York City that have the greatest health disparities. Our Specific Aims in this two-year exploratory
study are: Our Specific Aims in this two-year exploratory study are:
Aim 1: Conduct patient-centered research on a representative sample of patient-accessible
EMRs with a focus on three core functions: 1) Medication Management, 2) Lab/Test Results, and 3)
Health Maintenance (e.g., reminders for screenings). Our research will be based on a user-centered
design approach and include:
a) health literacy load analysis;
b) focus groups;
c) task analysis; and
d) usability testing.
We will perform these analyses of these core functions using a sample of patient-accessible
EMRs that are in wide-spread use in the United States and vary in structure and interface design.
Aim 2: Develop preliminary guidelines for designing, testing, and introducing patient-accessible
EMRs for underserved and at-risk populations that can be evaluated in a future larger-scale
effectiveness study.
Our target population is adults who are low-medium income, low-educated, low-literate
predominantly minority urban dwellers residing in Harlem, NY, seeking medical care at Mount Sinai
Medical Center, Department of Internal Medicine. This population is disproportionately impacted by
health disparities with poor overall health, high rates of chronic disease, low health literacy, and early
death.
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Contact Information
Christina Zarcadoolas, PhD
Public Understanding of Health and Science
Dept. of Preventive Medicine
Mount Sinai School of Medicine
PO Box 1057
One Gustave L Levy Place
New York, NY 10029
212-824-7061
Christina.zarcadoolas@mssm.edu