5 positives to sharing clinical notes with your patients

Tanya Albert Henry , Contributing News Writer

The open notes concept evolved from a trial involving about 10,000 patients a little more than a decade ago to last year becoming part of federal law that allows the nation’s 340 million patients to see the notes their physicians take during their visits.

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No doubt, it’s been an adjustment for physicians and the art and science of open notes continues to evolve. However, it has not been as daunting as some physicians and clinicians feared. For example, there wasn’t the huge increase in phone calls or patient portal messages that physicians worried would happen after they began sharing notes. In fact, it has provided more benefits than the average doctor expected.

During an episode of the AMA STEPS Forward® podcast, “Sharing Clinical Notes With Patients,” Tom Delbanco, MD, and Catherine DesRoches, DrPH, discussed the positive impact that sharing notes with patients has, along with some of the challenges that physicians continue to face.

Dr. Delbanco is a co-founder of OpenNotes and DesRoches is the executive director of the organization that is an international effort to promote and examine the impact of increasing transparency in care by inviting patients to read and contribute to their medical records.

“It is scary in concept, but in actuality it works out very well. The majority of doctors we have studied now … are becoming increasingly comfortable with the notion,” said Dr. Delbanco, who began sharing his notes with patients in the 1970s and was integral in getting grants beginning in 2010 to run studies looking at how opening up notes impacts physicians and patients.

Sharing clinical notes with patients was federally mandated under the new information-blocking rules that took effect last year.

An AMA STEPS Forward open-access toolkit, also called “Sharing Clinical Notes with Patients,” will help you understand the evidence that supports sharing visit notes with patients, identify how to educate team members on the new federal mandate for open notes, and learn how to write notes that are better suited for patients’ eyes. The six-step toolkit also will help physicians, patients and caregivers make the most of openly shared clinical notes.

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Studies show and physicians who now use open notes report that the practice helps in various ways, as outlined below.

Helps patients understand and remember the visit. Studies show patients only remember 50% of their visit and of that, they only remember half of that accurately. Seeing notes helps them understand and recall what was discussed.

Promotes medication adherence. A study in the Annals of Internal Medicine reported that two-thirds of patients surveyed said they better understood the reason for taking their medicine after reading their doctor’s notes and 15% said they are better adhering to taking their medicine.

Builds patient trust. That’s always been important, Dr. Delbanco said, but is especially important during these difficult pandemic times when public trust in physicians and medical science has been at an all-time low.

Improves shared decision-making. When patients can access their medical notes, it gives them greater insight into physicians’ thinking, the pros and cons of various approaches, and the potential benefits versus harms of medical choices. “How can you share decisions if you aren’t both on the same page, so to speak?” Dr. Delbanco said.

Informs family members and caregivers. Access to the notes helps them provide better care. This all adds up to better patient safety, DesRoches said. Patients reading notes have even sometimes discovered errors in the notes that are clinically significant, she said. For example, a medication dosage based on the wrong lab results.

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Dr. Delbanco and colleagues recently published a study showing that patients—particularly those in poor health or being unemployed—reported feeling judged and sometimes offended by something they read in their notes.

For example, a term like “SOB” that physicians recognize as “shortness of breath,” can be interpreted differently by patients, Dr. Delbanco noted during the podcast. Physicians must adapt to write notes that respect patients’ feelings and describe sensitive topics in a way that won’t offend them.

But working out these details shouldn’t scare off physicians, Dr. Delbanco said. The goal is to get to the “point where patients are actually using the information in notes to take care of themselves.”