As of July 1, 2019, the National Institutes of Health (NIH) Clinical Center in Bethesda, MD, joined 200 other health systems in the OpenNotes movement and started sharing clinical notes with their patients. At the NIH, the practice is being adopted widely and, in addition to sharing outpatient notes, notes written to document the course of inpatient care will also be readily available, a practice currently embraced by very few health systems at this time. Among the 27 NIH institutes and centers, 17 serve patients from all across the world at the Clinical Center, the largest research hospital in America.
“The Clinical Center looks forward to enhancing patient engagement,” said Tricia Coffey, Chief of the Health Information Management Department at the Center. “Our goals are to help patients remember critical information regarding care transitions, care plans, and important next steps or testing; to help empower patients to be active partners in the research and clinical care processes; and to improve overall quality and safety of care.”
Established in 1953, the NIH Clinical Center has more than 1,600 ongoing clinical research trials that provide care to people from across the nation and around the globe. These patients, who are partners in clinical research, are facing complex medical illness, many of which are rare diseases. These patients often also receive care closer to home, and it is common for them to request copies of their records from the NIH to share with local clinicians. Now, NIH Clinical Center patients will be able to log into the NIH Patient Portal and easily find inpatient progress notes and outpatient visit notes online.
The OpenNotes research initiative has a growing evidence base, with numerous studies showing that sharing notes with patients can increase trust between doctors and patients, help patients feel more in control of their health, and improve the quality and safety of care.
Before opening notes to their patients, the NIH Clinical Center invited OpenNotes leaders and patient advocates to share research findings and best practices with their clinicians and administrators.
“It was such an honor to present at NIH for the official launch of OpenNotes,” said patient and family advocate, Lisa Danielpour. “It’s so hard to remember details, whether in a clinic visit or hospital stay, yet so important to ensure patients and families understand their care plan which impacts both outcomes and research, and sharing visit notes is a critical part of that.”
“The NIH Clinical Center’s decision to share clinicians’ notes with their patients and their families, both in the office and on the hospital floors, has enormous significance,” added Tom Delbanco, MD, MACP, John F. Keane & Family Professor of Medicine at Harvard Medical School and Beth Israel Medical Center. “As the benefits of fully transparent communication become increasingly evident, the OpenNotes movement is moving gradually beyond the doctor’s office to a variety of settings. An exciting evolution!”
In addition to inviting OpenNotes team members to present, the Clinical Center created a short video to introduce OpenNotes to their clinicians. Watch their video below.