Nov. 24--Cheryl Halverson, who was diagnosed with breast cancer a year ago, took
notes during her visits with Ranveer Nand, the oncologist who oversaw her
treatment. She praised his skill in explaining the disease and his patience in
answering her questions.
Yet she still struggled to remember what she was told during those office
"When you are sitting in that office," Halverson said, "so many emotions are
running through you that you remember about half of what you're told."
That's why Halverson's response was "wow" when told of an initiative by Columbia
St. Mary's that gives patients secure online access to the notes a doctor or
clinician takes during an office visit.
Most of the health care systems in the Milwaukee area give patients access to
key information in their medical records, such as lab results and prescriptions,
through secure Internet portals.
But Columbia St. Mary's is the first to give them access to physicians' and
The initiative -- OpenNotes -- is an outgrowth of a study that involved more
than 100 primary care doctors from three medical centers and health systems
across the United States.
The response by patients was enthusiastic: 99% of the 5,391 patients who
completed a survey recommended the notes remain available, the study found.
"The vast majority reported an increased sense of control, greater understanding
of their medical issues, improved recall of their plans for care and better
preparation for future visits," according to an article in Annals of Internal
To the researchers' surprise, giving patients access to the notes didn't just
appeal to young people.
"It was not the case -- everyone liked it," said Jan Walker, one of the
researchers involved in the study and a principal associate at Harvard Medical
A physician's or clinician's notes summarize what was discussed as well as the
diagnosis, recommended treatment and other information considered important.
The OpenNotes initiative builds on the push to improve the way patients and
doctors communicate and to lessen the barriers that once dominated the
relationship between the two.
"It's a huge societal change," Walker said.
Another surprise from the study was few patients reported being worried,
confused or offended by the notes.
That was one of doctors' initial concerns, and the physicians at Columbia St.
Mary's also were initially wary of letting patients see their notes.
"I've come around, after at first being kind of cautious," said Nand,
Now he sees the value in the initiative not just for patients but also for their
Halverson, a 42-year-old Cedarburg mother of two who runs marathons, agrees with
During her treatment, her mother and other family members worried about
burdening her with too many questions.
"They really wanted to be involved and understand," Halverson said, "and this
would give them that peace of mind without the burden being on me."
Children involved in the care of elderly parents -- particularly if they live in
different parts of the country -- also are expected to welcome the initiative.
"There are many times when my dad will go to the doctor and what he remembers
may not really line up with what the doctor said," said one woman, who asked not
to be identified because she didn't want to embarrass her father.
Even when she goes with him to an appointment, she, too, struggles to remember
what the doctor said.
"There's too much information," she said. "It's easy to go back and reread it
when you have time to think about it."
Doctors also are often pressed for time. And patients often are uneasy when in
an exam room.
One study found that when patients were asked to repeat back what the physician
told them, half got it wrong.
"This is just an additional way to reinforce what we are thinking about and
what's the next step," said Sophie Kramer, an internist with Columbia St.
Kramer also sees the value for family members. She said she was thrilled the
daughter of a 95-year-old patient will be able to read her notes.
'Very nice tool'
Diane Sweitzer, 84, of Mequon said her initial response when told of OpenNotes
was, "Well, big deal."
Then she realized the benefits if she ever needs a caregiver -- and even for
herself right now.
Often when driving home from seeing a doctor, she said, she finds herself trying
to recall what he said. "And you are never sure," Sweitzer said.
Now she has a way of checking.
"It's a very nice tool," she said. "I'm all signed up."
Physicians at Columbia St. Mary's and elsewhere worried the notes could make
patients nervous, particularly if they contain information on other diseases
that could be causing their symptoms.
They also worried how patients might react when a physician describes them as
obese or notes they have the signs of being someone who smokes when they contend
"That probably was the biggest concern we had," Kramer said.
At other health systems, though, it hasn't been a problem.
"Maybe we are not giving patients their due amount of credit," Nand said.
If anything, the study suggests OpenNotes improves communication between
patients and doctors.
More than three-fourths of the patients said they felt more in control of their
care. And two-thirds of those with prescriptions said they were more diligent
about taking their medications.
That probably is an exaggeration, said Walker, the researcher involved in the
study. Still, the researchers were surprised by how often patients mentioned
"It seems like a really amazing finding," she said. "But I'm reluctant to
dismiss it because patients brought it up."
None of this surprises Halverson.
She immediately understood how access to a physician's notes would have given
her more information -- despite the extensive research she did on her own -- and
helped her make better decisions.
"You can only take so many notes," she said. "I would walk away and say, 'Now,
did he say this? Did he say that?'"
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