OpenNotes, a research group that advocates for better access, saysthat today about 40 million patients are a part of a health systemthat shares clinical notes through their electronic health recordsoftware. (Photo: Shutterstock)

When Pamela DeSalvo read the clinical note from her doctor'svisit, the words on the page hit her hard: “clinically morbidlyobese.” She knew she was overweight, but seeing those three wordstogether shocked her. It also inspired her to start losingweight.

“I needed to see it in black and white, what I actually in myheart already knew. It forced 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.

DeSalvo lives in Metuchen, N.J., and works in health informationtechnology. In the years after reading her doctor's notes, DeSalvokept that experience in mind as she helped Atrium Health implementa system that allows doctors to share clinical notes.

Related: Patients want doctors to be up on health caretechnology, but not too much

Many patients go home with a summary of their office visit. Thatrecap often includes a list of medications or reminders to schedulea follow-up. The full doctor's note has many more details —all thestuff the physician types into the computer during and after yourmedical appointment. Your medical history. The complaint thatbrought you to the office. Sometimes, physicians write down exactlywhat patients say. Mixed in are billing codes and the doctor'sthoughts about what might be happening with the patient.

A research project in Boston, called OpenNotes, encouragesdoctors to share their notes with patients. On the flip side, itinvites patients to ask for access to their doctor's notes. Theproject is housed at Beth Israel Deaconess Medical Center.

In one study, when researchers surveyed patients who'd looked at theirdoctor's notes, the majority of patients reported they felt more incontrol of their care and said they were more compliant takingmedication. A small share — from 1 percent to 8 percent —said the notes caused confusion, worry or offense.

Liz Salmi, a woman living with brain cancer in Sacramento,Calif., was an experienced patient advocate and blogger when she first got a look ather doctor's notes on her. After Salmi's insurance changed, sherequested her medical records. For $45, she received a 4,839-pagePDF on a disk along with her brain scans.

And she got curious. “I was, like, what is on these disks?”Salmi said.

There was no big revelation. And she didn't uncover anymistakes.

But it was a nice way to re-hear what her doctors had told herthrough the years. Salmi said the records are a time capsule ofsorts. As Salmi scanned the pages, she said, she discovered“meaningful nuggets” where her doctors quoted her verbatim.

“Just that level of detail made me feel like they werelistening,” said Salmi, who is featured in this week's episode ofthe podcast “An Arm and a Leg,” which is co-produced by KaiserHealth News.

Eventually, Salmi went to work for OpenNotes, and today she's asenior strategist who does outreach and communications for theresearch group.

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

But researcher Dr. Harlan Krumholz said a legal right doesn'tguarantee easy access.

Krumholz, a cardiologist and professor at Yale University,published a study in 2018 that examined the records-requesting process at83 top-ranked hospitals in the U.S.

The results varied widely. Some hospitals didn't meet statedeadlines for delivering the records, others charged exorbitantfees for the documents — well above the federal government'srecommendation for electronic records.

“What is clear from this is, it is hard for Americans to getaccess to their own medical records,” Krumholz said.

OpenNotes — the research group that advocates for better access— says that today about 40 million patients are a part of a healthsystem that shares clinical notes through their electronic healthrecord software. But each medical system is different, and it cantake time and effort to navigate an online portal to find whatyou're looking for.

“I've been under the assumption for years that patients couldaccess the notes whenever they wanted to, so I keep them objectiveand matter-of-fact,” said Dr. Neda Frayha, an internist whopractices at Ascension Medical Group in Baltimore.

She encourages her patients to review her notes.

“Being a patient is hard. Appointments take forever, and oftenclinicians don't spend a lot of time with patients,” said Frayha.“For many patients, it is hard to make sense of what is happening.If access to their note provides them with knowledge and assurance,then that is important to provide.”

Frayha said having her notes on display hasn't changed herbehavior or note-taking much. But, she said, “I think it's actuallygood for us as a profession to be more mindful of the words weuse.”

Kaiser Health News isa nonprofit news service covering health issues. It is aneditorially independent program of the Kaiser Family Foundation,which is not affiliated with Kaiser Permanente.

Read more: 

• EHR use growing among hospitals, but patient uselags
• More consumers turn to digital tools to managehealth
• Electronic health records to become moreinteroperable, intelligent