Letting Patients Read the Doctor's Notes
By Pauline W. Chen, M.D.
New York Times
October 4, 2012
http://well.blogs.nytimes.com/2012/10/04/letting-patients-read-the-doctors-notes/

The patient, a wiry businessman in his 50s, needed a
copy of his medical records to bring to a specialist for
a second opinion. He assumed that getting the copies
would be straightforward; the records were, after all,
his.

But after multiple trips to his doctor's office and the
hospital and several days of missed work, he learned
otherwise. At the hospital, after spending the good part
of a morning hunting down the right person to process
his request, he learned that signing the requisite
permission forms was not enough. He would have to pay
for the copies that would take several days to put
together. Those copies turned out to be incomplete, so
he had to wait another few days, and pay more, for
copies of the missing pages.

At his doctor's office, the staff and then his own
physician had responded to his request by asking him why
he even needed his records. "I told them the truth, that
I wanted a second opinion, but it was more than a little
awkward," he recalled. "I'm not sure if my doctor will
treat me differently from now on."

"It's like they and the hospital were doing everything
they could to make it harder for me," he said.

Two weeks later, dossier in hand, he swore he would
never let it out of his sight. But, he added, "I can't
say that this whole experience has given me a lot of
confidence in my doctor or my hospital."

This patient's experience, like those of so many others
who have tried to obtain their medical records, came to
mind this week when I read about the long-awaited
results of a study in which patients were given complete
access to their doctors' notes. The findings, published
in the Annals of Internal Medicine, do more than shed
light on what patients want. They make our current ideas
about transparency in the patient-doctor relationship a
quaint artifact of the past.

Since 1996, when Congress passed the Health Insurance
Portability and Accountability Act, or Hipaa, patients
have had the right to read and even amend their own
records.

In fact, few patients have ever consulted their own
records. Most do not fully grasp the extent of their
legal rights; and the few who have attempted to exercise
them have often found themselves mired in a parallel
universe filled with administrative regulations, small-
print permission forms, added costs and repeated delays.

Many physicians also remained hesitant to share their
notes, part of the patient's records, because of
concerns that such openness might have harmful effects
on both their patients' well-being and their own
practices. Some worried that mention of minor
abnormalities in laboratory values - for example, a
slightly elevated prostate specific antigen or white
blood cell count - could cause patients to worry unduly
about some dread disease.

Other doctors feared that common medical abbreviations
like "SOB" (shortness of breath) or "anorexic" (lack of
appetite) could be misinterpreted. Still others imagined
that writing notes with patient readers in mind would
only complicate the process, adding to the already
Sisyphean administrative demands of practice and
inviting an onslaught of patient e-mails and calls for
extended consultations.

Those fears, it now turns out, were largely unfounded.

For one year, the study, aptly called OpenNotes, allowed
over 13,000 patients from three medical centers - the
Beth Israel Deaconess Medical Center in Boston, the
Geisinger Health System in Danville, Pa., and the
Harborview Medical Center in Seattle - to have complete
access to one part of their medical records, the notes
that doctors wrote about them. Within days of seeing
their doctors, patients received an e-mail inviting them
to read the doctor's signed note on a secure patient Web
site. Two weeks before their return visit, patients
received a second e-mail inviting them again to review
their doctor's note from the previous encounter.

After a year, almost all the patients were enthusiastic
about the OpenNotes initiative.

Surprisingly, so were the majority of doctors.

Approximately three-quarters of all the doctors said
that such transparency had none of the dreaded impacts
on their practice. Many felt there was more trust,
better communication, more shared decision-making and
increased patient satisfaction. While a portion of the
doctors were hesitant at the beginning of the study, not
a single one opted to stop sharing notes with patients
after the study ended.

"Their fears simply never materialized," said Jan
Walker, one of the two lead authors and a registered
nurse and health services researcher at Beth Israel
Deaconess.

There were several surprising results for patients, as
well. While many said they felt more in control of their
own care, up to almost 80 percent of the patients said
that reading their doctors' notes helped them to take
their medications more regularly and better follow their
doctors' treatment recommendations. Furthermore, having
access to their doctors' notes became so important that
nearly all of the patients said any future decisions
regarding doctors or hospitals would be predicated on
being able to access their records easily.

All three hospitals in the study are working to allow
those patients who participated to continue to have
access to their doctors' notes. Beth Israel Deaconess,
which already allows all patients to view their test
results on a secure patient Web site, plans to expand
the program even further over the coming year, becoming
one of the first hospitals in the country to allow all
patients open access to notes from not only their
doctors but also their nurses and all other health care
providers.

And in what may signal even wider adoption of this new
vision of transparency, representatives from several
national health care groups, including the American
Medical Association and the American Hospital
Association, will be meeting in Washington next week to
discuss the study results and ways of implementing
similar programs in other institutions.

"On the one hand, we call this the `new medicine,'" said
Dr. Tom Delbanco, the other lead author and a primary
care physician who is a professor of medicine at Harvard
Medical School. "But we're also just giving patients
what is already their right."

He added: "It's as we say: Nothing about me without me."

___________________________________________

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