Electronic health records raise doubt

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 But transferring existing information from paper or outdated computers could take years and hundreds of millions of dollars to complete.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. "Check it," he said. "See if it's accurate."

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Australia: Another failure of government medical services -- a fatal one

Bureaucratic emergency operator could only go by the book -- and scolded man as he lay dying in the bush

TRIPLE-0 operators told off a dying teenager as he made desperate calls for help while lost in bushland in the Blue Mountains - even repeatedly asking him to name the street he was in. An inquest into David Iredale's death yesterday heard six heart-breaking calls made to emergency services after he became lost and disorientated during a bushwalk in December 2006, The Daily Telegraph reported.

The 17-year-old was two days into a three-day trek, having run out of water almost 24 hours earlier and endured temperatures of up to 37C, when he made the first of the increasingly frantic emergency calls. Ambulance officers admit to rescue failure

During the calls, which dropped out each time due to poor reception in the area, David told ambulance staff he was lost, had fainted and was unable to walk. Despite telling operators he was deep within the Blue Mountains National Park, he was repeatedly asked "What's the address, what suburb are you in?" and "Can you name any of the streets?". During one of the calls an operator scolded David for his tone, telling the scared teen "Don't yell at me" when he raised his voice to overcome the poor phone reception.

David's parents Stephen and Mary Anne walked out of the inquest as recordings of David's increasingly frantic pleas for help in his final moments were played.

Michael Windsor SC, representing the NSW Ambulance Service, admitted that there had been major failings. The inquiry heard rescuers were not provided key information about David's location until four days after he first became lost and transcripts of his calls to triple-0 were driven to Katoomba police station. "The service acknowledges that there was a failure on its part to accurately convey the details of the conversations with David Iredale to police," Mr Windsor said. "The service unreservedly apologises to the Iredale family because of the failures."

Jeremy Gormly SC, counsel assisting Coroner Carl Milovanovich, read the last words David wrote in a log book on Mt Solitary the morning before making his descent towards the river. "Got to the top!!! Haven't had H2O for a whole day but river coming up! Enjoy the view," he wrote.

Mr Gormly was scathing of the NSW Ambulance Service response, recommending that the inquest find that an urgent upgrade to procedures allow triple-0 calls to be emailed directly to rescue workers.

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