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Tackling Ambulatory Safety Risks Through Patient Engagement: What 10,000 Patients and Families Say About Safety-Related Knowledge, Behaviors, and Attitudes After Reading Visit Notes

Bell, Sigall K., MD*; Folcarelli, Patricia, RN, PhD; Fossa, Alan, MPH*; Gerard, Macda, BS; Harper, Marvin, MD§; Leveille, Suzanne, PhD, RN*∥; Moore, Caroline, MPH; Sands, Kenneth E., MD, MPH**; Sarnoff Lee, Barbara, LICSW; Walker, Jan, RN, MBA*; Bourgeois, Fabienne, MD§

doi: 10.1097/PTS.0000000000000494
Original Article: PDF Only

Background Ambulatory safety risks including delayed diagnoses or missed abnormal test results are difficult for clinicians to see, because they often occur in the space between visits. Experts advocate greater patient engagement to improve safety, but strategies are limited. Patient access to clinical notes (“OpenNotes”) may help close the safety gap between visits.

Methods We surveyed patients and families who logged on to the patient portal and had at least one ambulatory note available in the past 12 months at two academic hospitals during June to September 2016, focusing on patient-reported effects of OpenNotes on safety knowledge, behaviors, and attitudes.

Results A total of 6913 (28%) of 24,722 patients at an adult hospital and 3672 (17%) of 21,579 participants at the children's hospital submitted surveys. Approximately 75% of patients and parents each reported that reading notes helped them understand the reason for both tests and referrals, and approximately 50% felt that it helped them complete tests and referrals. Roughly 75% of participants were more likely to check and understand test results. Overall, 97% of participants reported that trust in the provider, activation, patient-provider goal alignment, and teamwork were each better or the same after reading 1 note or more. Nonwhite participants and those with high school education or less were 30% to 50% more likely to report that reading notes helped them complete tests compared with white and more educated respondents, respectively.

Conclusions Overall, the majority of more than 10,000 patients and parents reported reading notes helped them understand and follow through on tests and referrals. As information transparency spreads, OpenNotes can help activate patients and families, facilitate safety behaviors, and forge stronger partnerships with clinicians.

From the *Department of Medicine, and †Center for Healthcare Delivery Science, Beth Israel Deaconess Medical Center, Boston, Massachusetts; ‡Wayne Medical School, Detroit, Michigan; §Department of Medicine, Boston Children's Hospital; ∥College of Nursing and Health Sciences, University of Massachusetts; ¶Department of Social Work and Patient/Family Engagement, Beth Israel Deaconess Medical Center, Boston, Massachusetts; and **Clinical Services Group, HCA Healthcare, Nashville, Tennessee.

Correspondence: Sigall Bell, MD, Beth Israel Deaconess Medical Center, Department of Medicine, 133 Brookline Ave, OpenNotes - Fl 2, Annex building, Boston, MA 02215 (e-mail: Sbell1@bidmc.harvard.edu).

This study is supported by a grant from Controlled Risk Insurance Company/Risk Management Foundation of the Harvard Medical Institutions.

Portions of this article were previously presented at the National Patient Safety Foundation Annual Congress, Orlando, FL, May 17–19, 2017.

Supplemental digital contents are available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.journalpatientsafety.com).

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