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  Your Doctor's Notes?

When Pamela DeSalvo read the clinical note from her doctor's visit, the words on the page struck her hard: "clinically morbidly obese." She knew and was told about being overweight, but seeing those words together was a shock. However, it also inspired her to start losing the weight.

"I needed to see it in black and white, what I actually, in my heart, already knew. Those words told me to get honest with myself," DeSalvo said. "Reading that note saved my life."

Studies show that, indeed, reading your doctor's notes can improve your health.

Ms. DeSalvo lives in Metuchen, New Jersey, and works in health information technology. In the years after reading her doctor's notes, she kept that experience in mind as she helped Atrium Health implement a system that allows doctors to share clinical notes.

Many patients return home with a summary of their office visit. That recap often includes a list of medications or reminders to schedule a follow-up. The full doctor's note has many more details -- all the information the physician types into the computer during and after your medical appointment. Your medical history and the complaint that brought you to the office. Sometimes, physicians write down exactly what patients say. Mixed in are billing codes and the doctor's thoughts about what might be happening with the patient.

A research project in Boston, called Open Notes, encourages doctors to share their notes with patients. On the flip side, it invites patients to ask for access to their doctor's notes. The project is housed at Beth Israel Deaconess Medical Center.

In one study, when researchers surveyed patients who had looked at their doctor's notes, the majority of patients reported they felt more in control of their care and said they were more compliant when taking medication. A small share -- from 1% to 8% -- said the notes caused confusion, worry or offense.









Liz Salmi, a woman living with brain cancer in Sacramento, California, was an experienced patient advocate and blogger when she was first able to look at her doctor’s notes. After Ms. Salmi’s health insurance coverage changed, she requested her medical records. For $45, she received a 4,839-page PDF on a disk along with her brain scans. She became curious and asked herself "what is on this disk?" There was no huge revelation. And she did not uncover any mistakes.

It was a great way to re-hear what her doctors had stated to her through the years. Ms. Salmi said the records are a time capsule of sorts. As Ms. Salmi reviewed the pages, she discovered "meaningful nuggets" where her doctors quoted her verbatim.

“Just that level of detail made me feel like they were listening,” said Ms. Salmi.

Eventually, Ms. Salmi went to work for OpenNotes, and today she’s a senior strategist who does outreach and communications for the research group.

The Health Insurance Portability and Accountability Act, or HIPAA, which has been the law since 1996, allows patients to review and get copies of their medical records.

However, researcher Dr. Harlan Krumholz says a legal right does not always guarantee easy access.

Dr. Krumholz, a cardiologist and professor at Yale University, published a study in 2018 that examined the 'records-requesting process' at 83 top-ranked hospitals in the United States.

The results varied widely. Some hospitals did not meet state deadlines for delivering the records, others charged exorbitant fees for the documents -- well above the federal government’s recommendation for electronic records.

“It is clear from this study, that there are difficulties for Americans in acquiring access to their own medical records,” Dr. Krumholz says.

OpenNotes — the research group that advocates for better access — says that today about 40 million patients are a part of a health system that shares clinical notes through their electronic health records software. But each medical system is different, and it can take time and effort to navigate an online portal to find answers.

“I’ve been under the assumption for years that patients could access the notes whenever they wanted to, so I keep them objective and matter-of-fact,” says Dr. Neda Frayha, an internist who practices at Ascension Medical Group in Baltimore. 

Dr. Frayha encourages her patients to review her notes.

“Being a patient is sometimes difficult. Appointments can take forever, and often clinicians do not spend enough time with patients,” says Dr. Frayha. “For many patients, it is discouraging to make sense of what is happening. If access to their notes provides them with knowledge and assurance, then it is something important to provide.”

Dr. Frayha says having her notes on display has not changed her behavior or note-taking very much. But, she says, “I think it’s actually good for a physician's profession to be more mindful of the words we use.”