[LINK] Fwd: Electronic health records raise doubt, Google service's inaccuracies may hold wide lesson

[Jan Whitaker]

be careful what you wish for without understanding the implications - 
unintended consequences could be fatal.
jan


http://nalert.blogspot.com/2009/04/electronic-health-records-raise-doubt.html
Electronic health records raise doubt
Google service's inaccuracies may hold wide lesson By Lisa Wangsness,
The Boston Post| Globe Staff | April 13, 2009

WASHINGTON - When Dave deBronkart, a tech-savvy kidney cancer survivor,
tried to transfer his medical records from 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.

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 Google 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."

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.


Melbourne, Victoria, Australia
jwhit at janwhitaker.com
blog: http://janwhitaker.com/jansblog/
business: http://www.janwhitaker.com

Our truest response to the irrationality of the world is to paint or 
sing or write, for only in such response do we find truth.
~Madeline L'Engle, writer

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