WASHINGTON - When Dave deBronkart, a tech-savvy kidney cancer
survivor,
tried to transfer his medical records from Boston's Beth Israel
Deaconess
Medical Center to Google Health, a new free service that lets
patients
keep
all their health records in one place and easily share them with
new
doctors, he was stunned at what he found.
Google said his cancer had spread to either his brain or spine -
a
frightening diagnosis deBronkart had never gotten from his doctors
- and
listed an array of other conditions that he never had, as far as he
knew,
like chronic lung disease and aortic aneurysm. A warning announced
his
blood pressure medication required "immediate attention."
"I wondered, 'What are they talking about?"' said deBronkart,
who is 59
and lives in Nashua, N.H.
DeBronkart eventually discovered the problem: Some of the
information in
his Google Health record was drawn from billing records, which
sometimes
reflect imprecise information plugged into codes required by
insurers.
Google Health and others in the fast-growing personal health record
business say they are offering a revolutionary tool to help
patients
navigate a fragmented healthcare system, but some doctors fear that
inaccurate information from billing data could lead to improper
treatment.
"The problem is this kind of information should never be used
clinically,
especially if you don't have starting or ending dates" attached to
each
problem, said deBronkart's primary care doctor, Daniel Z. Sands,
who is
also the director of medical informatics at Cisco Systems.
Personal health records, such as those offered by Google Health,
are a
promising tool for patients' empowerment - but inaccuracies could
be "a
huge problem," said Dr. Paul Tang, the chief medical information
officer
for the Palo Alto Medical Foundation, who chairs a health
technology panel
for the National Quality Forum. For example, he said, an inaccurate
diagnosis of gastrointestinal bleeding on a heart attack patient's
personal
health record could stop an emergency room doctor from
administering a
life-saving drug.
Ideally insurance claims could provide a trove of data that
could greatly
accelerate the Obama administration's effort to computerize all
medical
records within five years. The stimulus package contained $17
billion to
help computerize doctors' records. But transferring existing
information
from paper or outdated computers could take years and hundreds of
millions
of dollars to complete. Insurance data, by contrast, is already
computerized and far easier and cheaper to download. But it is also
prone
to inaccuracies, partly because of the clunky diagnostic coding
language
used for medical billing, or because doctors sometimes label a test
with
the disease they hope to rule out, medical technology specialists
say.
"Claims data is notoriously inaccurate and notoriously
incomplete with
respect to an expression of the problems a person has," said Dr.
David
Kibbe, a senior technology adviser to the American Academy of
Family
Physicians.
Google Health directed questions to Dr. Roni Zeiger, a product
manager
for
the company; he said Google draws its information from a variety of
sources
sent by its partner hospitals, pharmacies, and laboratories,
including
claims data. He acknowledged that such billing information can
sometimes
be
imprecise, but he argued that the overall benefit of having some
information is better than no information and that accuracy will
improve
over time. For example, he said, a list of allergies, medications
and
recent lab reports can save a patient's life, particularly in an
emergency.
"Test results from last week can make the difference between
the right
decision and the wrong decision," he said. Zeiger said doctors
need to
evaluate information based on where it comes from and calibrate
treatment
decisions accordingly, which they often have to do anyway with
paper
records that can be incomplete, disorganized, or unavailable. But
records do not always clearly indicate the source of data for each
diagnosis. "That's something I think we could do better on,"
Zeiger
said.
DeBronkart's case shows how accuracy gets lost in translation.
His cancer
had at one point spread to his skull, but there is no code for
that, so
the
hospital probably instead used the code for metastases to the brain
or
spine, according to Sands. "Chronic lung disease" probably refers
to the
bronchitis deBronkart has had at various points in recent years.
"Anxiety
disorder" apparently referred to the anxiety deBronkart complained
about
during intensive chemotherapy, at a time he thought he might have
months
to
live - though he has not experienced it before or since.
The list of diagnoses also gave no indication of their severity.
"Aortic
aneurysm" was probably a slight widening of his aorta, Sands said,
not a
blood-filled bulge that burst. Google also did not date-stamp many
of
deBronkart's problems, so at times it did not distinguish current
issues
(cancer) from past ones (low potassium levels two years ago). Some
of the
dates were wrong - his cancer diagnosis was months off.
Patients who discover mistakes in their health records can
delete
information, add notes, or ask providers to correct problems. Dr.
Todd
Taylor, a former emergency room doctor who now works for Microsoft
Health
Solutions group, which makes the personal health record Microsoft
HealthVault, said patients "need to take an active role in
managing their
health data," preferably by reviewing them with a medical
professional.
DeBronkart, an early Internet enthusiast, considers himself an
"e-patient," someone who regularly connects with other patients
and
doctors to learn about his own healthcare. He and Sands speak at
conferences on the importance of active patient involvement. But it
was
not
immediately clear to deBronkart how to fix the errors in his Google
Health
record. At first he wanted the hospital to handle it, but that
would
involve changing codes on insurance bills from years ago, said Dr.
John
Halamka, chief information officer at Beth Israel Deaconess.
Ironically, Beth Israel has one of the most advanced electronic
medical
records systems in the country, with clinical records carefully
tended by
doctors and accessible to patients on a secure website. Sands, his
doctor,
said if deBronkart needed quick access to his file, he would be
better off
using the Beth Israel system.
But Google Health prefers providers send information in coded
form to
build
the list of a patient's medical conditions so the program can guide
patients to additional information on the Internet about each
disease
using
links. The neatly packaged billing codes are easier to link to than
the
mix
of medical terms and standard language doctors use in their
clinical
records.
Halamka and Zeiger said the records will improve as more precise
coding
language is adopted in the coming years. Halamka said thousands of
Beth
Israel patients have had access to Google Health since last May,
but
deBronkart is the only one who has complained of serious problems.
In the meantime, said Tang, who was recently appointed to a new
committee
advising the Obama administration on health technology, the risks
to
patients need to be studied further. "Probably for some patients
it's a
net benefit, and for others it's a risk," he said. "We need to
know what
the risks are so we can mitigate them better."
In the meantime, said Tang, who was recently appointed to a new
committee
advising the Obama administration on health technology, the risks
to
patients need to be studied further.
DeBronkart - who blogged about his Google Health experience on
the
website
e-patients.net - has some simple advice for patients who use
personal
health records.
"Check it," he said. "See if it's accurate."
c.2009 The Boston Globe