If we truly want patients to engage with clinicians about their health and care, we need to provide them with full and easy access to records that traditionally have been off limits. OpenNotes is a national movement that encourages clinicians—including nurses—to invite patients to read their visit notes. Offering patients easy access to their clinicians’ notes breaks down a barrier between patients and providers, affording patients a long overdue opportunity to better understand their care.
Made possible by funding from the Robert Wood Johnson Foundation, the OpenNotes movement began as a 1-year evaluation of the impact of sharing doctor’s office visit notes online with patients via secure Internet portals. We recruited 100 primary care physicians to share notes with 20,000 of their patients who were registered on the portals at three diverse sites: Beth Israel Deaconess Medical Center in Boston; Geisinger Health System in rural Pennsylvania; and Harborview Medical Center, a safety net hospital in Seattle.
What did we learn? Patients were enthusiastic about the experience and reported important clinical benefits; they better understood their health and care, reported taking their medications better, and in general, felt more in control of their care.
Contrary to their fears, doctors reported little or no difference in workload and at the end of the study, not one stopped offering open notes. On review of the results, all three study sites decided not only to continue, but to expand open notes. In addition, the Veterans Health Administration, Mayo Clinic, MD Anderson Cancer Center, Group Health, and Cleveland Clinic are now sharing or planning to share doctors’ notes with patients. At Beth Israel Deaconess, we’re expanding open notes to nurses and other clinicians as well, making the notes they write available to their patients.
What Does OpenNotes Mean for Nurses?
Open notes is a new resource for nursing practice. We hope nurses will open their own notes and use them when they teach and work with patients. When nurses act as key agents in transitions between care settings, such as being discharged from hospital to home, using clinicians’ notes could help families and caregivers as well as patients to understand the care plan and even increase the safety of these handoffs.
For patients, reading their open notes should remove some of the mystery about what we clinicians write in medical records. We hope this transparency will make patients more comfortable and encourage more open communication with their clinicians. We hope nurses will advocate for their practice settings to open notes to patients and also encourage patients to sign up for portals and read their notes. In settings without portals, nurses can support sending simple paper copies of notes to patients.
And nurses should involve themselves in further development of open notes and transparency; many questions remain about how to operationalize these concepts. Should all patients have access to all notes? What about patients with mental health issues, or cases of suspected abuse? Though doctors in the original study did not experience an increase in questions or comments from their patients, will this be true also for nurses?
Patients might want to grant proxy access to parts—but not all—of their records; can we offer them control over who can access particular parts of the record? How could transparency be incorporated into new delivery models, such as patient centered medical homes? An overwhelming majority of patients in the OpenNotes study wanted access to inpatient as well as outpatient notes; how might such transparency work in the inpatient setting?
Open notes presents an opportunity to reimagine patient engagement and communication through access to information, and nurses have the skills to address the administrative, ethical, and technical issues that confront groups considering adoption of open notes. We encourage nurses to experiment with how open notes and transparency can best benefit patients.
As patient advocates, educators, and change agents, nurses are in an excellent position to carry this movement forward. We are calling on our nursing colleagues to support this movement and help to make it a national standard of practice.
Learn more at www.opennotes.org.
Jan Walker is co-director of OpenNotes; Suzanne Leveille is research director; and Melissa Anselmo is program administrator.