September 21, 2023

A study published in Nature last year found that many ophthalmologists were concerned that patients would have trouble understanding their clinical notes and could lead patients to worry more. The study’s authors wrote that ophthalmology notes are “often indecipherable even to highly educated clinicians outside of ophthalmology,” with complex abbreviations and images.

Doctors in a JAMA Oncology viewpoint also raised concerns that open access to clinical notes could lead to anxiety for patients, who may reach out to clinicians more frequently.

With a shift to openly sharing clinical notes with patients, it can be difficult to hit a balance between wanting notes to be appropriate for patients to read while still ensuring a comprehensive medical record for the rest of a patient’s care team.

That’s a topic Cait DesRoches, an associate professor of medicine at Harvard Medical School, has been studying for years. She’s executive director of OpenNotes, a research group that advocates for sharing clinical notes with patients. The group dates back to 2010, with a pilot in which 105 primary-care doctors at three health systems released clinical notes to their patients.

“Patients were uniformly very positive about it,” she said. “Clinicians reported few changes to their workflow.”

Hospitals are acutely concerned about adding to providers’ workload as clinicians are reporting rising rates of burnout, especially amid the COVID-19 pandemic.

The pilot’s results, published in Annals of Internal Medicine in 2012, found that at most 8% of physicians across the three sites reported spending more time addressing patients’ questions outside of visits, at most 21% reported they were taking more time to write their notes and 3-36% reported changing the content of their clinical notes.

But all the participating physicians continued to share clinical notes with their patients after the pilot ended, and patients reported myriad benefits.

Since then, researchers and clinicians involved in OpenNotes have continued to study how to best share data across medical specialties.

Most providers don’t change the way they document care, DesRoches said, and patients still see benefits. Patients tend to recognize that clinical notes serve various purposes and may include technical terms.

There are exceptions. A 2019 study in Practical Radiation Oncology found that while all radiation oncology patients who accessed clinical notes found them useful, a small group of patients did report negative effects. Roughly 11%, 6% and 4% of patients, respectively, indicated reading clinical notes led to increased worry, confusion and finding information they regret reading.

But generally, research has found that most patients who have access to clinical notes feel more in control of their care, according to DesRoches, along with better understanding of their diagnosis and adherence to treatment plans and medications. It can also help to avoid errors as patients are able to identify inaccuracies in their records.

It can even help patients gain trust in their care team.

“Even among patients who don’t read their notes … just the offer of the notes seems to have a relational benefit for that trust,” DesRoches said.

Beyond transparency

To help guide patients through their medical records, some hospitals have turned to care team members. Technology could also play a supporting role, health IT experts say.

Baptist Health in Jacksonville, Florida, had already been sharing clinical notes with patients before the data-sharing rule went into effect, said Aaron Miri, the system’s chief digital and information officer. He’s also a co-chair of the Health Information Technology Advisory Committee that works with ONC.

The health system set up training for medical staff that encourages clinicians to re-read notes with the patient perspective in mind. That ideally results in clinicians not using as many abbreviations or complex medical terminology, and in cases where they must, contextualizing what it means for patients.

For example, physicians wouldn’t just note they performed a biopsy, Miri said. They would explain why the test was run and the results of the test. Physicians should also consider including a patient’s body mass index rather than writing that they’re obese, and not abbreviating in ways that can be easily misinterpreted—such as not writing “shortness of breath” as “SOB.”