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Patient Data Access News

10M Patients Access Electronic Health Data through OpenNotes

OpenNotes has grown over the past four years, helping nearly 10 million patients access their electronic health data and boosting patient engagement.

Ten million patients are seeing their provider’s notes through OpenNotes, granting them greater access to their electronic health data and driving greater patient empowerment.

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According to a public statement, the OpenNotes initiative has expanded from just 20,000 patients to 10 million participants in just four years.

“The results of the OpenNotes study involving 105 primary care doctors and 20,000 of their patients were shared in the Annals of Internal Medicine in 2012,” said OpenNotes executive director Cait DesRoches, DrPH.

“Just four years later, we’re seeing the culture shift toward transparency in the patient and provider relationship really take hold, and we’re beginning to understand the benefits that openness brings to everyone in the health care delivery system.”

While OpenNotes is not a technology, but rather a philosophy for improving patient engagement, it still requires robust use of health IT tools. Through patient portals and other patient-provider communication tools, patients can access their health data and physician notes. This improves patient empowerment and education.

The Department of Veterans Affairs is one of the largest health systems to offer OpenNotes.  The VA adopted the philosophy in 2013 to improve patient access to health data. Today, nearly three million VA patients access their data through OpenNotes.

“VA patients tell us that having copies of their visit notes is a powerful communication tool, and provides greater control of their care,” said Susan Woods, MD, MPH, director of Patient Experience in the Connected Care Office.

A 2013 study showed that VA patients liked having access to their physician notes not only to better educate them, but to help remind them of what occurred during their past appointments. This helped VA patients get ready for upcoming appointments, as well.

“It kind of better prepares me for the upcoming appointment, because I’ve got the data in my own hand,” one veteran said during the study. “So, without starting out all over again, him repeating a whole lot of history, we can start a conversation at the treatment level we’re at right now.”

OpenNotes has expanded further than just the VA. According to the press release, 12 health systems have begun working with OpenNotes in the last six months alone. These health systems include Duke Health in North Carolina, Rush University Medical Center in Illinois, and UCHealth in Colorado.

UCHealth officials say they look forward to adopting OpenNotes and helping to empower their patients through easier information access.

“UCHealth is excited to be the first in the state of Colorado to offer OpenNotes to all patients in our system,” said Chen-Tan (C.T.) Lin, MD, Chief Medical Information Officer at UCHealth.

“Open notes are now available across the spectrum of care, from outpatient clinics to hospital discharge summaries, to emergency department notes. We believe that information transparency is crucial; an informed and engaged patient is a healthier patient.”

OpenNotes leaders are also excited about the progress the movement has made.

“We’re thrilled to be making progress,” said Tom Delbanco, MD, co-founder of OpenNotes. “Ideally, the notes help tell the story of the patient’s medical life, and offering patients ready access to them is simply the right thing to do. We still have a long way to go, but 10 million is a big step toward making OpenNotes the standard of care for all patients.”

Despite this positive growth, OpenNotes still has work to do. According to a study published in the Journal of the American Medical Association, 90 percent of providers approve of greater patient access to health data, but want to see some changes to OpenNotes.

Some providers report apprehension with sharing their unfiltered notes with their patients, and others worry physician notes will cause undue worry for patients.

Some OpenNotes participants are working to mitigate these issues. At MD Anderson Cancer Center, providers withhold laboratory, radiology, and pathology results until a physician can speak with her patient about what the results mean.

At VCU Health, hospital leaders coach their providers in how to communicate with patients about open test results.

“So in order to help the docs understand that it’s okay, what we taught them was to change the conversation,” says the director of VCU’s Office of Clinical Transformation Deborah Burgett, RN, MSHA.

“They may end up getting the results before [the patient], but explain that to them. Say, ‘you may see this before me, and if you’re worried about it, we’ll talk. I promise, we’ll talk. If it’s too long, give me a call. Or send me an email, send me a message through the portal.’”

Moving forward, OpenNotes will likely continue its growth, and healthcare organizations may need to assess which strategies will work for their unique patient population. By carving out these strategies, providers can cater their patient engagement and data sharing efforts to the individual patients at hand.

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