Open Wide …

By Barrett Sheridan | NEWSWEEK
Published Oct 25, 2008
From the magazine issue dated Nov 3, 2008


As the U.S. Presidential debates have shown, Barack Obama and John McCain can't agree on much. One rare exception: electronic health records. Obama has proposed spending $50 billion to help doctors and hospitals digitize their files and build patient databases. McCain agrees that electronic recordkeeping could lower costs and save lives—say, by helping doctors more easily recognize which patients are on dangerous drug combinations. Their proposals are part of a larger trend to bring the U.S. medical system, which still runs on paper and pens rather than bits and bytes, into the 21st century. Many businesses, from IBM to Procter & Gamble, have embraced the Web 2.0 ideals of transparency and decentralized problem-solving—what technologists call "open source." But is it a good idea to apply those values to private health matters? Some Web-savvy health-care practitioners are coming to the view that making data about your health freely available to family, friends and doctors could enhance the quality of care.

There are a lot of reasons to be afraid of sharing your health information. In countries without a national health plan, such as the United States, insurance is the biggest. Most providers exclude pre-existing conditions from their coverage, giving people an incentive to hide early warning signs of disease. Plus, some employers might discriminate against potential hires if they're aware of a serious medical condition. And then there's the social stigma attached to illnesses like AIDS. For the most part, however, these are problems of policy. Private insurers might punish those who reveal pre-existing conditions, but that means there's something wrong with the insurance industry, not with such admissions in and of themselves.

Now that the health sector is beginning to embrace Web 2.0 tactics like social networking, sharing your health information may become an everyday occurrence. "On the one hand, you care a lot about the privacy of health information," says Peter Neupert, a vice president at Microsoft in charge of the company's health-related products. "But in order to make it valuable, you have to be able to share."

His group's signature product is HealthVault, which enables people to store their records online. Users can even sync their accounts with some medical devices, such as heart-rate monitors or weight scales, so that the data are entered automatically. The idea is to make it easier for individuals and their doctors to monitor health status.

To be sure, neither Neupert nor Microsoft advocates radical transparency, and they've taken great pains to ensure that HealthVault users have complete control over who can see what. (Even the name reinforces the idea of security.) But Neupert says that people living with chronic conditions like diabetes might benefit by opening up. "It's not just 'I've got a bad gene; I've got a bad organ'," he says. "Part of it is a function of the way you live in the world—how you eat, how you exercise. So at the end of the day, you have to address behaviors." Enlisting family, friends or other communities can help. For instance, a person with hypertension might give others access to his blood-pressure readings stored on HealthVault, so that they can help watch for danger signs. "The concept of health is a social concept," Neupert adds.

James Heywood, cofounder and chairman of PatientsLikeMe.com, would agree. His site is like a Facebook for those who suffer from multiple sclerosis, Lou Gehrig's disease and other ailments. It allows patients to share stories, treatments, drug side effects and more. "We've had doctors say, 'Is it legal for patients to share with each other?' as if it's intrinsically wrong for people to share information," Heywood says. "I bought a new flat-screen TV two days ago. I can't imagine someone arguing whether it's ethical for consumers to be able to share their insights about televisions. I find it kind of astounding."

That's why 19,000 people—the number of users on PatientsLikeMe.com—have agreed to put intimate details, like whether a certain drug causes constipation, on a social-networking site. Collective knowledge—something that the Web, and in particular the social Web, is very good at enabling—allows them to put their disease in context. Am I taking a lower dose than other ALS sufferers? How normal is this side effect? Bringing health histories out into the open can provide answers to those questions, something that even doctors can't do.

It's also about gathering the collective wisdom, and making it available to researchers. "In the end, it's the same as open-source software," says Heywood. "If you can see all the information, you can correct the errors." Drug firms and doctors are far from infallible, and in this way the PatientsLikeMe community serves as a useful check. The site is, in effect, building an enormous database of patient data that can help determine if drugs and treatments are having the desired effect.

Of course, such research is what economists call a positive externality—it doesn't necessarily help the person doing the sharing. That might limit the appeal of transparency. But this is the era of the "overshare," after all, when deeply personal information regularly makes it to blogs and MySpace pages. And the trend has two powerful backers: both Obama and McCain have released their health records to the public.

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