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Open Notes in COPD: A Study of the Effects of Inviting Patients with COPD to Read Their Clinic Notes

HSS Investigators: Kimberly Fisher, Kathleen Mazor
Funding Agency: Robert Wood Johnson Foundation, Gordon and Betty Moore Foundation, and Peterson Center on Healthcare
Status: Complete

Project Overview: Patients report many benefits of access to their clinic notes (Open Notes) including increased patient activation and self-management, which are particularly important in chronic illnesses such as chronic obstructive pulmonary disease (COPD). Despite this promise and increasing numbers of patients being provided access to their clinic notes, little is known about how patients understand and react to the information in clinic notes. We conducted in-depth ‘think-aloud’ interviews with patients with COPD who had been provided a written copy of their most recent COPD-specific clinic note.

Main Findings: Patients reacted positively to statements in the notes suggesting the provider listened to them (“he’s got my thoughts in here, which…makes me feel good about the fact that he listened to me”), saw them as a person, and was attentive to details (“I don’t even realize that he does that.”); all of which fostered the relationship. Reading notes enabled patient self-management through motivation (“seeing it [smoking history] in black and white makes you think”). It also prompted patients to seek more health-related information and reminded them of action steps. Patients indicated notes facilitated information sharing with other providers and family members, served as a longitudinal record of care, and provided an opportunity for patients to learn details of their condition they had not gleaned from the visit (“I didn’t get all this from the doctor. I got this from reading.”) – each strengthening information exchange. Most patients reacted negatively to medical terminology, abbreviations, incorrect information, and wording that was perceived as disparaging (“he is an active smoker would’ve been fine, instead of putting abuse down there”). Sharing clinic notes with patients is a promising tool that can strengthen the patient-provider relationship and promote self-management and information exchange. As patients increasingly access their clinic notes, more research is needed to ensure notes are written in a way that optimizes communication with patients, while fulfilling other functions of clinical documentation.  Learn more here.

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