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OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes.
Jan Walker1,2, Suzanne Leveille1,3, Sigall Bell1,2
1Division of General Medicine, Beth Israel Deaconess Medical Center, Boston, MA, United States.
Journal of Medical Internet Research
|May 9, 2019
Summary
Patients find reading their visit notes through OpenNotes very important for managing their health and rarely experience negative effects. This practice offers significant benefits, especially for underserved populations, outweighing potential risks.
Area of Science:
- Health Informatics
- Patient Engagement
- Digital Health
Background:
- OpenNotes expanded from a pilot to encompass nearly all clinicians in primary care and specialty practices.
- This followed a 2010-2011 pilot program offering patients secure web-based access to office visit notes.
Purpose of the Study:
- To examine patient experiences and perceptions of reading ambulatory visit notes.
- To assess the benefits and risks associated with broad clinician note sharing.
Main Methods:
- A web-based survey was conducted across 3 large US health systems.
- Adult patients with recent visit notes available via patient portals were included.
- Patient-reported behaviors and perceptions regarding note reading were the main outcome measures.
Main Results:
- Over 22,000 patients read their notes, reporting high importance for health management, feeling in control, and remembering care plans.
- Few patients reported confusion or worry after reading notes; 37.7% shared notes with others.
- Underserved populations (less educated, nonwhite, Hispanic, non-English speakers) reported significant benefits.
Conclusions:
- Patient note reading via OpenNotes is highly valued for health management and rarely causes distress.
- The benefits of OpenNotes for patients, particularly underserved groups, largely outweigh the risks.
- Increased clinician-patient discussion of shared notes is needed as the practice expands globally.
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