Patients Turn To Online Community For Help Healing

A woman types on her computer. i i

hide captionIncreasingly, patients are sharing and learning from experts and other patients like them through social media Web sites.

iStockphoto.com
A woman types on her computer.

Increasingly, patients are sharing and learning from experts and other patients like them through social media Web sites.

iStockphoto.com

When Americans go looking for information on health, they turn to the Internet as one of their first sources. According to a recent survey by the Pew Internet and American Life Project, 61 percent of adults say they look online for health information. There's a term for them: e-patients.

Most e-patients go online to read about a health condition. But that seems almost passive compared to the way a small group of Internet-savvy people are connecting to get their health information.

About 20 percent of e-patients go to Internet and social-networking sites where they can talk to medical experts and other patients, says Susannah Fox, with the Pew Internet and American Life Project.

"They are posting their first-person accounts of treatments and side effects from medications," says Fox. "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 terms of the future of participatory medicine."

This reflects the growth of social-networking sites. "The Internet now is not just information," says Fox. "There is a social life of information online. And 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."

Ahead Of The Medical Community

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. "The patients on the vanguard, who understand what's at stake, are saying it's not meaningful if I can't use it," she says.

So they're going to Internet and 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 used advanced encryption, firewalls and other technologies to keep private information secure.

Power From Knowledge Sharing

Jamie Heywood, who created another site called Patients Like Me, 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. "What's sad is, you know, 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," he says.

"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."

Heywood created Patients Like Me 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 patients gain power 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.

"The amazing shift is that we've pushed out this concept of sharing," says Heywood. "Which is to say: 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."

You can find another patient who knows what you're going through, says Heywood, someone who "is on the same treatments, is dealing with the same side effects ... whatever variable matters to you at that moment. To find out whether your concerns are justified, they make sense, whether you're doing the right thing — that's the transformation."

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.

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