In this July 2013 file photo, doctors in Vancouver use high-tech programs and electronic medical records to help patients monitor their own health. ***Trax #00022597A Photo: Mark van Manen/Postmedia News Canada’s premier medical journal says it’s time patients had easy access to something they normally aren’t invited to see: the notes their doctors write about them.
In an era of electronic health records and password-protected portals, patients should be able to access their medical records as easily as they do online banking, argues an editorial in the Canadian Medical Association Journal.
Patients already have the right to see their medical records, including their doctors’ notes. But those legal rights come with “hoops and speed bumps,” the editorial says, including lengthy delays (up to 90 days in some parts of the country) and copying fees.
“Modern information technology and Internet capability offer the potential for useful transparency that has been shown to benefit patients and the health care system,” writes CMAJ deputy editor Dr. Kirsten Patrick.
“It is no longer appropriate for physicians to want to conceal their version of a patient’s story from the patient,” Patrick writes. “Proper shared decision-making depends on a story on which both agree.”
What’s more, she said, “patients Really Like It.”
In the U.S. more than three million Americans now have electronic access to what their doctor’s write in their medical records through a national initiative known as OpenNotes.
The movement began with a one-year pilot study in 2010, when more than 100 doctors working at three large family medicine practices in three states agreed to invite more than 20,000 of their patients to read their notes securely online. Patients received emails when a doctor’s note was signed and posted to their portal.
The results were “striking,” according to the researchers: patients felt more in control of their care, had a better understanding of their medical issues and were more likely to take medications as prescribed. They were also able to share their notes with their caregivers.
At the end of the year, virtually all patients surveyed wanted “open notes” to continue and none of the doctors chose to opt out.
Few patients said reading the notes made them feel worried, confused or offended, as some doctors feared it would, said Jan Walker, an assistant professor of medicine at Harvard Medical School and co-founder of OpenNotes at Beth Israel Deaconness Medical Center.
Patients rarely requested doctors change their record and while many MDs worried they would have to spend more time “editing” or writing notes, knowing their patients might read them, or face a barrage of follow-up questions and emails from patients, most doctors reported little or no impact on their workloads.
Walker said opening doctors’ notes to patients could improve patient safety by allowing people to catch mistakes in their records.
In the U.K., the government has pledged to have open notes starting in 2015.
For patients, “What’s not to like?” said Patrick, of the CMAJ. “It’s your most valuable information — your health information — and people don’t like to be kept in the dark,” she said. Patients like transparency, she said. “They like to see what their doctors write about them.”
Some doctors worry that, if patients could read what they write about them, would they misinterpret?
Notes can be candid, describing a patient as “obese,” “anxious” or “malingering,” meaning willfully pretending to be sick when they aren’t.
“There’s this classic example where a patient got very upset because a doctor wrote in his notes ‘SOB’, which is shorthand for shortness of breath,” Patrick said. The patient took it an entirely different way.
“We need to be able to write notes in a way that can be understood” and patients need to be allowed to question what’s in their record if it’s inaccurate, she said.
In Canada, “all of these notes belong to the patient, so there should be no question about their access to them,” said Sholom Glouberman, president of Patients Canada.
“But there are all kinds of barriers put in place. We’re very much against that. We think that patients should have access to their notes and should be able to contribute to their notes as well.”
Toronto’s Sunnybrook Heath Sciences Centre offers a service known as MyChart, which offers patients online access to their hospital records, clinic visit notes, test results and other information. The program has been in operation since 2006.
“We really have given (patients) the ability now to stay connected to information that could be critical,” said Sarina Cheng, director of information services, e-health strategies and health records at Sunnybrook.
“The other big part of this that makes us unique is the power that the patients are feeling. They’ve just never had this before,” said Cheng.
skirkey(at)postmedia.com
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