Every time you see the doctor, he or she writes a note about the encounter for the record. Normally you never see it.
A lot of what's in that note is objective stuff about your blood pressure, weight and blood count. But often your doctor puts down subjective impressions.
Did you seem down? Anxious? Angry? Drinking too much? Not so mentally sharp?
Physicians also may speculate about a tentative diagnosis — maybe a scary one — they haven't shared with you.
"The medical record has traditionally been viewed by the medical establishment as something that they own," says Dr. Tom Delbanco of Harvard Medical School. "They think: 'It's my private notes. This is my stuff.'"
Opening Doctors' Private Notes
Delbanco, a primary care specialist at Beth Israel Deaconess Medical Center in Boston, is trying to pry open the black box of doctors' notes and let patients in on the secret stuff.
Doctors' notes are not really secret anyway. Other doctors see them. Insurance companies and lawyers do. And under a 1996 federal law called the Health Insurance Portability and Accountability Act, or HIPAA, patients have every right to see their complete medical records.
"You can get it," Delbanco says. "But we do everything in the world to make sure you don't get it."
It's not uncommon, for instance, for hospitals and doctors to levy hefty by-the-page charges to copy medical records. Some even require the doctor to be standing by as the patient reads, to clear up any confusion.
Delbanco wants to sweep away the obstacles and invite patients routinely to read what doctors really think.
"My hope is that it will be a method of communicating with patients," he says, "so patients can see what we're thinking, where our head is, what our plans are, why we're suggesting what we do."
Many patients like the idea of easy access to the doctor's notes.
"I would actually find that very useful," says Amit Dixit, 41, a Boston software engineer. "It's a great reminder of what I need to do, number one. And also to understand where [my doctor] is coming from."
Making Doctors Less Candid
But doctors are a harder sell.
"The physician response is all over the lot," Delbanco says. "It ranges from 'Well, transparency is here, this will be good for patients, they'll be more actively involved in their care, this is a terrific idea,' to 'This is the worst thing I've ever heard of.'"
Dr. Michael Thane is one of the skeptics. He works in the same hospital as Delbanco. "My guess," he says, "is that many of my colleagues would be decidedly cool to the idea."
Thane brings up a common concern that doctors may pull their punches if they know the patient's looking over their shoulder.
"We may be less candid," Thane says. "We may not as accurately describe the mood of the patient, the tenor of the encounter, for fear that we may get someone perhaps already a little angry during the encounter — more so after they log on and read the note that I just finished."
Delbanco says doctors often have other concerns:
-- It will be more work, because patients will call up wanting to know what something means, or demanding corrections.
-- It might lead to more lawsuits.
-- It might scare the hell out of patients.
There will have to be exceptions, he says. HIPAA allows records to be withheld from certain patients, such as paranoid schizophrenics. (But Delbanco says some mental health professionals actually like the idea of sharing their notes.)
Patients Have A Right To Know
Dr. Thomas Lee understands doctors' reservations. He's president of the physician group at Partners, New England's largest health care network.
"Physicians are scared of this kind of thing," Lee says. "But I think the big, broad directions are clear. Which is: Patients have to be at the center of their care more and more. That doesn't mean patients call the shots. But patients really have to be a team member."
To be a team member, they've got to see the playbook, he says. And doctors will have to learn "to be respectful in the way they write their notes in some situation."
At the same time, he adds, when a patient is overweight, or there's some other delicate problem, doctors "shouldn't dodge that topic, and patients should be prepared to see some things which may be a little painful for them to confront too."
But Lee isn't ready to open the medical records to Partners Healthcare patients.
"To be perfectly honest, I'm glad someone else is doing it, as opposed to the place where I'm practicing myself," he says. Partners is working on a different idea — having doctors write an end-of-session summary, although this would be "new work" for busy physicians.
You find the same ambivalence down the ranks. Dr. Julia Lindenberg has been practicing primary care medicine for three years at Beth Israel Deaconess. She agrees with Delbanco that doctors' notes should be open.
"I absolutely believe that it's something that patients should see," Lindenberg says. "And I actually think that it may affect care positively."
But she says she won't be volunteering for a $1.5 million national study of "open notes" that's about to begin. "I think I'd like to see what happens with it before I participate," she says.
The experiment will involve about 100 doctors and around 30,000 patients at Beth Israel Deaconess, Geisinger Clinic in rural Pennsylvania, and Harborview Medical Center in Seattle.
Delbanco says he'll know in a year or so if doctors and patients in the study like the new openness — or want to go back to the old, closed way.
Copyright 2022 NPR. To see more, visit https://www.npr.org. 9(MDAzMjM2NDYzMDEyMzc1Njk5NjAxNzY3OQ001))
