Doctor-notes access expands

Health systems move to open up files for their patients

More U.S. patients will soon have free, electronic access to the notes their doctors write about them under a new federal requirement for transparency.

Many health systems opened up records Monday, the original deadline. At the last minute, federal health officials last week gave an extension until April because of the coronavirus pandemic.

Britta Bloomquist of Duluth, Minn., has been reading her clinical notes for years, first struggling through red tape and more recently clicking into a secure online patient website.

“It means information about your care can no longer be hidden from you. And you have a say in your care,” said Bloomquist, 32, who has a rare type of arthritis that took years to diagnose.

Patients have long had a right to their medical records, including doctor notes, but obtaining them could mean filling out requests, waiting for a response and paying fees. A 2016 law said delays and barriers must be removed.

A person who already uses a patient portal such as MyChart to email a doctor or schedule an appointment may soon see new options allowing the patient to view doctor notes and see test results as soon as they are available. The patient may get an email explaining where to look, how to share access with a caregiver and how to keep other eyes off the information.

Many people won’t notice a change. About 15% of health care systems already are letting patients read doctor notes online without charge. That means about 53 million patients already have access to their doctors’ notes.

Studies have shown that patients who read their notes understand more about their health, take their medications as prescribed more often, and feel more in control of their care.

That’s true for Bloomquist. Diagnosed with a rare type of arthritis called ankylosing spondylitis, she had extensive surgery to straighten her right leg in 2018. She gets regular drug infusions and sees multiple specialists. It’s a lot to remember.

“I’ve become a health nerd,” Bloomquist said. “Reading the notes has kept me on the same page as my providers about what’s going on.

Under the regulation, psychotherapy notes don’t need to be shared with patients. And doctors can hold back a note if they think it will cause physical harm, such as a note about domestic violence if the abuser has access to the patient’s health information.

As for parent access to teenagers’ information, state laws vary. That means some health systems allow parents to see at least some of their teenager’s notes, while others do not.

Parents can check with their children’s doctors to find out how it works in their states.

Some doctors worry this will mean more phone calls from confused patients.

Dr. Marlene Millen of UC San Diego Health, which launched a pilot program for primary care patients in 2018, said that’s not her experience.

“I did not get a big bump in questions at all,” Millen said.

Many patients aren’t interested in their notes and never read them, she said. Others do, but they save her time because they arrive for appointments “and already know what the next step in the plan is because they had read the prior note.”

UC San Diego Health opened notes to another 130,000 patients Monday, as more specialists are added. Millen, who’s been highly involved in the transition, said it’s frustrating” the federal deadline was extended just last Thursday.

“We spend all this time getting ready, and we could have spent that time doing other things like working on the pandemic,” she said.