RENEE MONTAGNE, host:
Of course, many Americans go looking for health information on the Internet and in some cases, they seem to be using the Web much more effectively than their doctors.
NPR's Joseph Shapiro explains.
JOSEPH SHAPIRO: We go online to read about some health care condition. That's still the most common way people use the Internet for health information. But it seems almost passive compared to the way a small group of Internet-savvy people are connecting online.
Susannah Fox is with the Pew Internet and American Life Project.
Ms. SUSANNAH FOX (Researcher, Pew Internet and American Life Project): They are posting their first-person accounts of treatments and side effects from medications. They are recording and posting those Podcasts. They're tagging content. They are part of the conversation. And that, I think, is an indicator of where we could be going in the future of participatory medicine.
SHAPIRO: Fox says a recent survey by her group show that 61 percent of adults say they look online for health information. There's a term for them: e-patients. And about 20 percent of them, the ones who are changing things, go to social networking sites where they're talking to medical experts and other patients.
Ms. FOX: The Internet is not just information. There is a social life of information online. People are using all these tools to connect with friends and family, to connect with health professionals. And people are accessing a much deeper level of information now than they were five years ago.
SHAPIRO: Fox says patients are far ahead of doctors and hospitals when it comes to using the Internet. According to a study in the New England Journal of Medicine last year, only about 17 percent of doctors say they use computerized medical records. Fox says a growing number of patients are tired of waiting for doctors to share information.
Ms. FOX: The patients on the vanguard, who understand what's at stake, are saying it's not meaningful if I can't use it.
SHAPIRO: So they're going to social networking sites that allow them to put their own medical data online. Microsoft last month introduced My Health Info, and Google has Google Health. People use these sites to enter their lab results or track their blood pressure or cholesterol over time. The sites say they take added security measures to keep private information secure.
Jamie Heywood, who created another site called PatientsLikeMe, says people are used to tracking all kinds of personal information online, so they don't understand why they can't get the records that their own doctors can order up.
Mr. JAMIE HEYWOOD (Co-founder, PatientsLikeMe): What's sad is they order all this information, and they get it back from the lab, and it comes back in this rich electronic format with all this information on it. And in an ideal world, you'd be able to get that raw information just like you can on your credit card for every transaction you do in the world. But you can't in health. It's immoral.
SHAPIRO: Heywood created PatientsLikeMe because he was trying to find out about research advances that might help his brother, who later died of Lou Gehrig's disease.
Heywood's site is still small - about 50,000 people have joined - but they come together and share personal information with others who have the same illness, such as multiple sclerosis, fibromyalgia or bipolar disorder.
Heywood says he came to see there's power for patients when they share medical information, even the most private of information. By sharing on social networking sites like his, Heywood says patients can make better choices about their own care.
Mr. HEYWOOD: The amazing shift is that if you share information about your own experience with this disease, then we can facilitate the conversation that you want to have with the person in the world who is just like you, whether they live in Vancouver, Canada or Australia, or down the block, who's the most like you, is in the same family situation, is on the same treatments, is dealing with the same side effects, to find out whether your concerns are justified, they make sense, whether you're doing the right thing � that's the transformation.
SHAPIRO: The Pew study found that 39 percent of e-patients already use a social networking site like Facebook and mobile devices are making it easier. But the source patients say they trust the most remains a traditional one: their own doctor, even a doctor who still keeps records on paper.
Joseph Shapiro, NPR News.