Clinical Center News
Summer 2019

Focused on transparency, Clinical Center expands patient access to medical record notes

Attendees of the Open Notes session gathered together
On June 18, an informational session was held for staff and patients regarding OpenNotes. Left to right: Tricia Coffey, chief of the NH Clinical Center Health Information Management Department; Lisa Danielpour, mother of an NIH Clinical Center patient and family advocate; Jan Walker, co-founder of OpenNotes, Dr. Tom DelBanco, co-founder of OpenNotes; and Laura Lee, chief of the NIH Clinical Center Office of Patient Safety and Clinical Quality

On July 1, the NIH Clinical Center expanded how it shares information with its patients. The Clinical Center already shares some documents from patients' electronic medical records, or Clinical Research Information System (CRIS). This summer, more notes will be sent to the Clinical Center's patient portal for patients to review, including inpatient and outpatient progress notes that log lab results, treatments and medical procedures.

Launched in 2013, the patient portal is a secure system that provides patients with access their medical information.

As with other healthcare organizations already sharing notes, the Clinical Center is moving forward with this initiative to enhance patient engagement. The goal of this shift is 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.

Researchers have reported that organizations who share visit notes through patient portals have found it beneficial. Some of those findings show that patients report improved adherence with care plans and medication regimens and physicians report improved patient satisfaction and trust. Additionally, considerable research demonstrates that engaged patients have better outcomes.

Overall, sharing notes with patients can lead to improved communication, collaborative decision-making and enhanced patient engagement.

"For care providers, this will encourage us to think more deeply about the information we provide," said Dr. James Gilman, CEO of the NIH Clinical Center. "The discipline needed to make notes more understandable can lead to greater insight to the best care options, as well as flag erroneous information and potential risk of harm."

Members from OpenNotes, an organization promoting and studying the effects of sharing more information with patients, visited the Clinical Center June 18. They presented a session open to all, including patients, on guidelines for writing notes, hearing a patient's perspective and further details regarding the Clinical Center's implementation. There were also breakout sessions with behavioral health and pediatric providers.

Finalized progress, visit and other notes shared through the implementation of OpenNotes are now available in the patient portal.

Marketing materials, brief training videos and other information materials will be shared in the patient portal information site shortly.

- Donovan Kuehn

Nurses working on a pedigree diagram within a patient's medical record
nurse kneeling beside a pediatric patient
people gathered around computers
Patient standing with care providers
The metabolic kitchen staff creating precisely measured ultra-processed and unprocessed meals for study participants
Attendees of the Open Notes session gathered together
Pediatric patient ten-year-old JoJo with Dr. Cynthia Tifft
Branden Bolivar proposes to Marissa Amuso, a patient, May 9 at the NIH Clinical Center
Tom Kaminski with Dr. Sherman Souther
Kayden Reinke, at the age of 2, holding Lammie
Project SEARCH graduates and team
Dr. Marijo Bilusic
Singer-songwriter and pianist Chris Urquiaga
Three women photographed with an award
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A pediatric patient with her mother and members of the NIH Blood Bank
NIH musical group led by Dr. Collins performing on stage
Dr. Eric Betzig at the podium
Children conducting a science experiment
Trina Davis
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Staff member using a sewing machine
Dr. Saul Rosen
a patient's wristband getting scanned upon checking in or out
Michael Bard, a volunteer medical musician, holds his guitar in a patient room
Nancy Holmfeld
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Health Information Management Department staff posing for a photo
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Teresa Bauch showing children cultures of infectious diseases on Take Your Child to Work Day
Staff at the site of a new facility
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Men on stage at the awards
Josh and Lisa Danielpour
A redesigned common area in the NIH Clinical Center Edmond J. Safra Family Lodge
Nicholas Rodriquez enjoying the Virtual Reality experience
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Retired Navy Capt. Pius A. Aiyelawo speaking at the NIH Veterans Day Celebration Nov. 7
Pediatric patients are given candy by departments at the Clinical Center
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Karen Baker, Dr. Colleen Hadigan and Victoria Anderson stand in a hallway.