Vaulting ambition

If recent press reports are right, the Conservatives are thinking of giving commercial health record platforms a big role in their forthcoming NHS IT strategy. But how have Microsoft HealthVault and Google Health gone down in the US? And why are both still in beta? Neil Versel reports.

British newspapers have been full of speculation that the Conservatives could give patients the option to transfer their medical records to commercial health record platforms; junking parts of the National Programme for IT in the NHS in the process.

As E-Health Insider has reported, if this happens the two most likely beneficiaries will be Google Health and a Microsoft offering called HealthVault. However, like the National Programme, they remain works in progress, hampered by the slow adoption of electronic health records in general, public apathy and occasional growing pains.

Not the only PHRs

HealthVault, introduced in November 2007, and Google Health, unveiled in May 2008, both remain in beta release, with access restricted to US residents – although Microsoft has contracted to introduce HealthVault to Canada next year and to provide accounts for US medical tourists in Thailand.

Both products have grabbed plenty of headlines in the American press, but they still haven’t grabbed many regular users. Microsoft and Google haven’t said so, but anecdotal evidence from several large US hospital systems suggests that personal health record platforms (PHRs) are not in widespread use.

A third offering called Dossia provides some sense of optimism. Dossia is a project of several major corporations, including Wal-Mart Stores, BP America, Intel and Sanofi-Aventis, to provide portable PHRs to their US employees.

Wal-Mart has said that about 50,000 of the approximately 1m people it provides health insurance for in the US are Dossia users, which is a higher rate of PHR adoption than several insurance companies report.

Both Microsoft and Google prefer to call their healthcare products ‘platforms’ rather than PHRs. Microsoft representatives declined to be interviewed for this story and Google did not respond to multiple requests for comment.

But in a May interview with US publication MobiHealthNews, Google Health product manager Dr Roni Zeiger said: “A key part of the value of Google Health is that users can not only use the application, but also connect the application to a variety of other sources, whether importing data from a hospital, pharmacy, lab company or sharing with a family member or even connecting with a service like the Heart Attack Risk Calculator from the American Heart Association. All of those iterations are possible because Google Health is, indeed, a platform.”

In Canada, where telecommunications firm Telus has obtained an exclusive HealthVault license, users will have access to applications for chronic disease management, wellness and disease prevention. According to Telus Health Solutions executive vice president Marc Filion, the HealthVault platform is for health information management, providing a place for such things as reminders of appointments, diet and exercise tips and smoking cessation advice.

“[Patients] want tools to manage their health,” Filion says. The company will brand its platform as “Telus Health Space, powered by Microsoft HealthVault” when it launches the product in 2010.

“These [platforms] exist to aggregate data,” explains Dr Daniel Sands, director of healthcare and medical informatics for the Internet Business Solutions Group at Cisco Systems. He is unsure whether this is best way to build a complete EHR and argues that many questions remain. “Where do you store the data? Who’s going to vouch for the safety of the data? Who’s going to pay for it?” Sands wonders.

Gaining trust

To date, trust seems to be the biggest hurdle for third-party data repositories. It’s certainly a hurdle that will have to be climbed in the UK.

In response to the stories about the Tories’ potential plans (which they have not confirmed or denied), the Daily Mail’s Stephen Glover wrote a column with the incendiary headline: “Entrust my medical records to Google? I’d rather give them to Bin Laden.”

“People who deposited their medical records with Google would no doubt be given assurances that they would not be passed on to third parties. But Google would not go to the trouble and expense of storing such information unless it hoped to benefit from it in some way," Glover wrote.

Both Google and Microsoft have said that they would not serve advertising tailored to a specific patient. Google has indicated on numerous occasions that it would not attempt to monetise content from Google Health and that any revenue would come from driving Google Health users to the core search engine.

“Data mining is not a dirty thing as long as there are constraints around it,” says Sands. However, few things are as sensitive as health information. “This isn’t storing Word documents online. This is much weightier,” Sands notes. “It’s not a science experiment. It’s people’s personal data.”

Dr Deborah Peel, a Texas psychiatrist who founded a group called the Patient Privacy Rights Foundation, shares Glover’s sentiment if not his rhetoric. Her group plans a privacy certification programme for health IT software. Microsoft is one of the first companies to agree to have their products tested when the programme starts. Google and Dossia have not.

Microsoft requires HealthVault advertisers to use information only for the stated purpose of the transaction unless they receive explicit patient consent. “That’s the toughest advertising contract in the health realm that we have seen,” Peel says. She also feels Microsoft has been more transparent and specific about how it will protect privacy. “Google is resoundingly silent,” Peel says.

What’s in the box?

Beyond the issue of trust issue is accuracy of the records. “Are we bringing the right data into the equation?” Sands wonders. Ask a patient of his named Dave deBronkart and the answer is a resounding ‘no’.

DeBronkart, a cancer survivor from New Hampshire who regularly blogs about his medical experience as “e-Patient Dave,” transferred his hospital data to Google Health in March and was surprised to read that his kidney cancer had metastasised to either his brain or his spine.

The record also suggested that deBronkart had an aortic aneurysm and that his potassium level was too low for him to continue on his blood pressure medication.

But the cancer had actually affected his lunghs, while deBronkart doesn’t really have an aneurysm. His potassium level hadn’t been low since being hospitalised at Boston’s Beth Israel Deaconess Medical Center two years earlier.

The inaccurate information apparently came from insurance claims; the codes listed for billing purposes are different than those for reporting diagnoses.“It’s not really clinically useful data,” says Sands. “Some people may say it’s better than nothing, but we want to make sure it’s accurate.”

“They tried to approximate clinical reality by using billing codes,” deBronkart says. In his case, there was no code to express tests conducted to rule out other conditions, so his record showed false positives.

“If the cookies on our web site aren’t right, we will get bogus information about where people come from,” says deBronkart, a software marketing professional. “It’s one thing if you’re doing that with web traffic data. It’s another if you’re doing that with people’s lives.”

Beth Israel Deaconess subsequently stopped populating Google Health records with claims data. “One of the fundamentals about automating anything is the quality of the data,” deBronkart explains. "You also need an appropriate data model, an appropriate vocabulary, for the task at hand."

The Google and Microsoft platforms remain in beta, which is perhaps symptomatic of health IT as a whole remaining in an adolescent phase. “The IT grownups haven’t really shown up yet in healthcare,” deBronkart says.