Healthcare Transparency

What patients value about reading visit notes: a qualitative inquiry of patient experiences with their health information

Background: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking.

Objective: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes.

Methods: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74).

Catalyst for Payment Reform: Listening In (With Permission): Dr. Tom Delbanco on his crusade to help patients access their medical records

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Wisconsin Health News: MORE WISCONSIN DOCTORS OPENING THEIR NOTES

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Allina Health gives patients expanded access to their medical records

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Wall Street Journal: The Delicate Question of Sharing Medical Information With Adult Children

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How to Get Patients to Take More Control of Their Medical Decisions

For years, patients have been hearing the same message from the health-care industry: Get involved.
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Do You Have Access to Your Doctors Notes About You?

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Student-accessible healthcare records: A mixed-method study of college student and provider

This mixed methods study evaluated student and provider attitudes and expectations about offering students online access to their student health services visit notes (open notes). Six (N=6) health care providers from four public universities in northeastern Massachusetts participated. Qualitative interviews were completed by students (N=14) from one University in fall of 2013 and an online survey was completed at two universities in Spring of 2014. Attitudes and expectations were explored using qualitative data and descriptive statistics were used to analyze survey questions. Students’ interviews revealed that they desire control over their health and open notes would give them insight and involvement in their health care. Survey data supported these themes. In contrast, providers worried about how it could impact provider-patient relationships. Open notes has the potential to promote students’ understanding and responsibility for their healthcare, which could assist students in their transition from pediatric to adult health care.

International Research

How To Use Open Notes