Patients Turn to Social Websites to Discuss Ailments, Worrying Some Doctors

Social media sites have drastically changed how people interact with each other. But have they also changed the way we handle our health?

Most of us know, or have at least heard of, Facebook, MySpace and YouTube. But there are some lesser-known websites like, and that are using the social media model to help patients connect with each other, enabling them to amass real-world data on their conditions and treatments.

“At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: Speeding up the pace of research and fixing a broken health care system,” according to the website, which has over 65,000 members.

These sites have three main objectives:

1. Connect patients with similar demographics, who share common symptoms and ailments to help them find better treatment options.

2. Compile the information those patients share to form a database that people can refer to, and a network where people can track their information, as well as other people’s.

3. Analyze the collected health information and get people involved in clinical trials that research new treatments.

Ben Heywood, who co-founded PatientsLikeMe in 2004, told that they build communities where people can go find patients suffering from the same conditions, who are also the same age and sex, and learn what treatments may work best from everyone’s collective experience.

“Generally, what we find is that the medical system doesn’t have the answers that you’re looking for with the specifics of your illness,” Heywood said. “So, they’re very quickly turned to other sources to find this information.”

A 2009 Pew Forum study titled “The Social Life of Health Information” found that 61 percent of all adults looked online for health information. Additionally, 20 percent of people had posted something on a forum related to health care.

Dr. Marc Siegel, Fox News contributor and professor of medicine at NYU, sees the potential benefits of using sites like these, but also cautions users about the risks.

“The problem is no one case is the same,” Siegel said. “I would just say it’s not a good way to learn about your particular illness, but it is a good way to share your feelings.”

Physicians are also concerned about what happens after patients with similar illnesses or symptoms compare notes online. Do they use that information and bring it to their doctor, or might they cut the doctor out of the equation?

This is the issue some have with this concept of the ‘e-patient,’ which these sites promote.

Dr. Gary Rogg, a family physician with the Montefiore Medical Center in New York City, thinks that these sites can be effective as a springboard for patients to seek medical treatment. While some may do that, he said, the majority will come into his office with their minds already made up about what treatments they will or won’t take.

“I see an e-patient as an engaged, empowered patient who consults multiple sources… in making a health decision,” said Alexandra Carmichael, co-founder of CureTogether, a social health site whose members share information on over 500 conditions. “The main advantage for me as an e-patient is feeling more in control of my health.”

Both Carmichael and Heywood made the decision to start their social health networks because of personal experiences. Heywood’s brother, Stephen Heywood, died in 2006 from Lou Gehrig’s disease. Carmichael suffered through 10 years of chronic pain, and decided she wanted to help others avoid what she had to endure alone.

Heywood, Carmichael and DIYgenomics founder, Melanie Swan, all claim that their sites are an enhancement to the patient’s relationship with their doctor, not a replacement.

“Rather than cutting their doctors out of the equation, they do their research and bring it to their doctors. So, the doctor becomes more of a partner,” Carmichael said.

Siegel believes it is imperative if patients use social health networks that they treat it as an educational resource, and follow up with a doctor for proper diagnosis.

“You can’t become a patient-expert overnight. You can’t go from just experiencing something to becoming an expert,” he said.

Not only do social health sites allow people to become more active in their health care, Swan argues that they force doctors to step up their game.

“What I have heard is that doctors are now having to be more prepared for when people start showing up with their genomic information,” said Swan, who founded DIYgenomics this past March to help the average person understand their individual genetic makeup.

To do that, Swan’s team is organizing clinical trials for people who have had their genetic information analyzed to help them better understand their results, as well as research new associations between genomic profiles and disease. The website, which is still under construction, will be the hub of their social network and clinical trials.

“People can come and log in, and that will be basically the eBay of genomics, or the Facebook of genomics,” Swan said. “It will be an official citizen scientist platform, where people can log in, interact, review everybody else’s data, post up a study, recruit people for their study, run their study.”

Swan has outlined 25 clinical trials. One is already in the works and will study vitamin D deficiency. It will involve 60 to 70 volunteers, but Swan hopes to conduct future trials on a larger scale.

Like Swan, Carmichael sends e-mails to site members to alert them to clinical trials associated with the condition that they report in their profile. But unlike Swan’s company, trials aren’t organized through CureTogether.

Carmichael launched CureTogether with Daniel Reda in 2008 to help people “anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions, and contribute data to research,” according to the website.

Although CureTogether and PatientsLikeMe both cater to those suffering from chronic conditions like epilepsy and multiple sclerosis, there are significant differences in how they use the information that their e-patients share.

PatientsLikeMe sells their members’ health data, without their identifying information, to drug makers and other third parties. This has raised concerns that pharmaceutical companies will use that information to market drugs more than develop new treatments. Conversely, CureTogether analyzes their members’ data with the help of researchers from various colleges, Carmichael said.

“We've tried to strike a conservative balance between protecting patients' privacy, and furthering research into their condition,” she added. “To be honest, we haven't yet figured out a good business model that doesn't exploit patients. Maybe clinical trial recruitment will be it… We're running a bunch of experiments.”

Although Swan acknowledges the potential for exploitation, she thinks that having a more direct relationship with researchers and pharmaceutical companies could empower, rather than exploit, patients.

“Traditionally, it costs over a billion dollars to bring a new drug to the market, so the pharmaceutical companies just have to focus on blockbuster drugs because it’s so expensive,” Swan said. “But maybe there are researchers that want to check into a population of 20,000 people with a particular disorder.”

“The medical system now is set up to lock down all of this information, and it harms patient care and long-term treatment research,” Heywood said. Rogg relates the decision to explore, or even create a social health network or other alternative option, to dissatisfaction with the health care system.

Social health networks are growing in number and popularity. is another social health network that has seen a lot of growth with over 150,000 members. Although the success of these sites isn’t likely to replace the doctor entirely, it may redefine the doctor-patient relationship, if it hasn’t already.

“I think we’re all super complimentary and this community-based research segment is just going to grow,” Swan said.