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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."

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Member Comments

  • Posted By: life09 @ 04/09/2009 11:33:48 PM

    I know that came out months ago in the paper. Every is allowed to say how they fell so here I go. If you have never had a member of your family or if you are not a member of MI and so on the you have no I deal the hell one goes threw. Yes its up to your doctor what kind and the amount of med you take but they can't tell how it should make you feel unless they have take-n it. All they can do is tell you what the " side effects are supposed to be". The sites "PatientsLikeMe" is a place where one can go and talk to some one who has not jut read or study about it but who has lived it. And yes we talk about or meds we talk about what side effects one might have, if they think it works for them. We express how we feel what we feel in side. We are thier for each ohter beacause we the "Patients" on that site need some one who has been threw it os one who is going threw it. Just because you give one meds does not make them better right off the bat.No one has to be along and no one should ever be alone that is at lot of what wrong in thid world lots of people think that if you give a pill its "ok we are done have a good life deal with" and some find that by not thinking about it then its not real at least until it happens to someone they know. I have Bipolar I do not care who know I have had good & bad days as well as good meds and bad meds but I don't give up an dits great have someone that I can turn to other then someone that just wants to give me another pill. I have a support group out side of a doctors office, which I love my doctors they do a great job but some times you just need to talk with people who are where you are at

  • Posted By: ancient @ 11/01/2008 8:02:37 AM

    Your physician should be able to tell you why you are taking a lower dose of the drug and if constipation is a side effect if he knows what he is doing. What you are bringing together is a lot of self reported data that is anecdotal,. Given the issues with memory that humans have, how accurate this anecdote is is unknown. These kinds of data can serve as a starting point for more research. Personally, I don't want to know what other people think about my disease. All of us are born alone and die alone.

  • Posted By: sailor4 @ 10/26/2008 1:52:36 PM

    Web 2.0 will empower the common man to share and discuss medical information, which was closet with medical prfessionals so far. The web sites like patientslike me and myhealthvillage bring the two worlds together for helping people undertstand their health like never before.

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