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Open Access Highly Accessed Study protocol

Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project

Suzanne G Leveille12*, Janice Walker1, James D Ralston3, Stephen E Ross4, Joann G Elmore5 and Tom Delbanco1

Author Affiliations

1 Division of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, USA

2 College of Nursing and Health Sciences, University of Massachusetts Boston, Boston, USA

3 Group Health Cooperative, Center for Health Studies, Seattle, USA

4 Division of General Internal Medicine, University of Colorado, Denver, USA

5 Department of Medicine, University of Washington School of Medicine, Harborview Medical Center, Seattle, USA

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BMC Medical Informatics and Decision Making 2012, 12:32  doi:10.1186/1472-6947-12-32

Published: 13 April 2012

Abstract

Background

Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians' visit notes included. We designed a one-year multi-site trial of online patient accessible office visit notes, OpenNotes. We hypothesized that patients and primary care physicians (PCPs) would want it to continue and that OpenNotes would not lead to significant disruptions to doctors' practices.

Methods/Design

Using a mixed methods approach, we designed a quasi-experimental study in 3 diverse healthcare systems in Boston, Pennsylvania, and Seattle. Two sites had existing patient internet portals; the third used an experimental portal. We targeted 3 key areas where we hypothesized the greatest impacts: beliefs and attitudes about OpenNotes, use of the patient internet portals, and patient-doctor communication. PCPs in the 3 sites were invited to participate in the intervention. Patients who were registered portal users of participating PCPs were given access to their PCPs' visit notes for one year. PCPs who declined participation in the intervention and their patients served as the comparison groups for the study. We applied the RE-AIM framework to our design in order to capture as comprehensive a picture as possible of the impact of OpenNotes. We developed pre- and post-intervention surveys for online administration addressing attitudes and experiences based on interviews and focus groups with patients and doctors. In addition, we tracked use of the internet portals before and during the intervention.

Results

PCP participation varied from 19% to 87% across the 3 sites; a total of 114 PCPs enrolled in the intervention with their 22,000 patients who were registered portal users. Approximately 40% of intervention and non-intervention patients at the 3 sites responded to the online survey, yielding a total of approximately 38,000 patient surveys.

Discussion

Many primary care physicians were willing to participate in this "real world" experiment testing the impact of OpenNotes on their patients and their practices. Results from this trial will inform providers, policy makers, and patients who contemplate such changes at a time of exploding interest in transparency, patient safety, and improving the quality of care.

Keywords:
Patient access to records; Electronic health records; Primary care physicians; Internet; Medical records; Medical informatics; Patient participation