doctor patient relationship, doctor notes, health care

Is it a Good Idea For Patients To Read Their Doctor’s Notes? Interview with:

Janice D. Walker, RN, MBABeth Israel Deaconess Medical Center

Janice Walker

Janice D. Walker, RN, MBA
Beth Israel Deaconess Medical Center What is the background for this study?

Response: In 2010-2011, we launched a pilot intervention in which a limited number of primary care doctors shared the notes they wrote about an office visit with their patients via secure online portals they accessed through their health systems; this practice became known as open notes (our program is called “OpenNotes”). We then surveyed patients and their primary care providers to get feedback on their experiences and published the results in the Annals of Internal Medicine in 2012. After the study, the three large health systems that participated—Beth Israel Deaconess Medical Center in Boston, University of Washington Medicine in Seattle, and Geisinger in rural Pennsylvania—made open notes available across ambulatory specialties.

In this paper, “OpenNotes After 7 Years: Patient Experiences with Ongoing Access to their Clinicians’ Outpatient Visit Notes,” we wanted to examine the ongoing experiences and perceptions of patients who read ambulatory notes written by a broad range of doctors, nurses and other clinicians. We did this by surveying patients who had been seen in a hospital or community based practice, were registered on their patient portal, and had at least one note available to read in a recent 12-month period. The main measures include patient-reported behaviors and their perceptions concerning the benefits and risks of reading their visit notes. What are the main findings?

Response: The new study, the first to include large numbers of patients reading notes written by nearly all clinicians across primary and specialty care, found that reading visit notes offers many benefits to patients. Seventy-three percent of those reading notes rated the practice very important for helping them take care of their health and feeling more in control of their care, 66 percent reported it helped them remember their plan of care, and 63 percent rated the availability of notes as very important for choosing a future provider. Few were more worried or confused after reading notes. Respondents who were less educated, nonwhite, older, Hispanic, or usually did not speak English at home reported the most benefit. Whether or not they chose to read their notes, 98 percent thought online access to visit notes was a good idea. What should readers take away from your report? 

Response: Note sharing between clinicians and patients is a relatively low-tech, low-cost method for improving transparency in healthcare while delivering important benefits to patients. What recommendations do you have for future research as a result of this work? 

Response: While the findings confirm that the benefits of note reading extend beyond primary care practices to virtually all specialties and types of clinicians, more needs to be learned about using open notes as a tool for communication and promoting interaction between patients and clinicians across health care venues and populations. For example, to what degree might active educational interventions help patients learn from their records? Could having patients contribute to notes, perhaps by writing about their symptoms or articulating their goals for a visit, promote better patient-clinician communication or even off-load work from beleaguered clinicians?

At a time when medical practice in the U.S. is moving toward open notes as a new standard, the patients participating in this study offer both affirmative and provocative reports. Building shared notes into the fabric of care remains a work in progress. Is there anything else you would like to add?

Response: All authors had financial support for the submitted work from the Robert Wood Johnson Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and Cambia Health Foundation. The funders had no role in designing or conducting the study, analyzing the data, preparing the manuscript, or deciding to submit the manuscript for publication 


Walker J, Leveille S, Bell S, Chimowitz H, Dong Z, Elmore JG, Fernandez L, Fossa A, Gerard M, Fitzgerald P, Harcourt K, Jackson S, Payne TH, Perez J, Shucard H, Stametz R, DesRoches C, Delbanco T
J Med Internet Res. 2019 May 6;21(5):e13876. doi: 10.2196/13876.

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May 28, 2019 @ 10:56 pm 

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