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Collaborative Science and Healthcare

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Despite the advancements of modern medicine, our basic approach to health care has remained unchanged for centuries. It assumes that physicians are smart and patients aren’t. Doctors wait in their office or hospital for sick people to come to them in order to be told what to do. Traditionally, patients have been passive and ill-informed, playing little or no role in deciding their own treatment. As one physician puts it: “Today’s health care institutions are like the old media: centralized, one-way, immutable and controlled by the people who created and delivered it. Patients are passive recipients.” In other words, the health system is broken.

Now, courtesy of the digital revolution, there are tools that allow us to take more responsibility for our own health, and for patients to collaborate with their doctors and, equally important, other patients.

All of us, including newborns, should have our own online Personal Health Page. Just as Facebook keeps you updated on your friends’ activities, your Health Page would keep you up to date on issues affecting your health. You could have links to organizations such as Weight Watchers or a local diabetes support group. You could create a community or join medical “causes.” And low-cost or free applications could help you measure your own health, prediagnose a sick child or test for possible drug interactions.

By moving the heart of our health care system online, and making each of us more informed and involved in our health, we would get a lot more bang for our health care buck. Knowing what’s happening in your body motivates you to change your behavior. If you weigh yourself daily, for instance, you’ll be more successful at shedding pounds and keeping them off than if you weigh in weekly.

When we are better informed about our health, we make fewer trips to the emergency department, we don’t make unnecessary doctors’ appointments and we require fewer costly home-nurse visits.

Some early examples of this kind of thinking can already be seen online. Users of MedHelp.com, a popular online health community, are able to track more than 1,500 symptoms and treatments on a daily basis using iPhone apps that cover both general health conditions, such as weight loss and allergies, and very specific disorders, such as infertility and diabetes. If they want, patients can share this information on a continuing basis with their doctors or caregivers.

Doctors should do much more to encourage patients to take advantage of the resources available in online health care communities. A good example is PatientsLikeMe.com, a vibrant health care community whose members suffer from debilitating chronic conditions such as ALS, Parkinson’s and bipolar disorder. Members use the site to track the evolution and management of their diseases. But rather than keep all their data private, many members share it with the patient community and the medical research community.

This openness ultimately benefits everyone. Patients can learn what’s working and, in consultation with their doctors, adjust their own treatment plans. Drug companies can use anonymous patient data to evaluate new treatments and thus bring them to market more quickly. “People think we are a social networking site,” says PatientsLikeMe co-founder Ben Heywood. “But we’re an open medical framework. This is a large-scale research project.”

Of course, we need the buy-in of the biggest players – namely government and insurers – to help maximize these opportunities and help people from becoming needlessly sick.