Tweet your chart: Why social sharing of medical data is a good idea

December 17, 2010: 5:00 AM ET

Concerns over digital privacy, especially of medical records, have never been higher. Yet startup PatientsLikeMe says there's much to be gained from the crowdsourcing of ailments -- and treatments.

PatientsLikeMeOver a decade ago, Ben Heywood's brother was diagnosed with Lou Gehrig's disease, a fatal neurological disorder. Back then, people didn't post status updates or Tweet about what they had for lunch, let alone share their diagnoses, symptoms and treatments with web-based social networks.

Determined to find an outlet for patients to share experiences with one another, Heywood  (along with two co-founders, another one of his brothers and a fellow MIT engineer) launched PatientsLikeMe in 2005. Today, the online community has amassed over 80,000 members, many of whom share intimate details—like symptoms of sexual dysfunction and diarrhea and the exact dosage of each drug they take—with each other. Over 10,000 PatientsLikeMe users opt to make their profiles "public," which means they're accessible to anyone on the Internet, not just other members.

"People find power in sharing—it's part of the healing process for patients," says Heywood, president of PatientsLikeMe.

Of course, Heywood's site is no longer the only outlet for people who want to exchange personal health information. There are plenty of other social networks out there for patients of diabetes, cancer, mental health disorders and other diseases. There's also Facebook, where an increasing number of people are disclosing all sorts of medical stats, like their daily caloric intake, how far along they are in their pregnancy or even their latest chemotherapy session.

So what's next, a shared, online repository that tracks your vitals, doctor's visits, and medication history? Perhaps.

"As electronic medical records become more available to everyone we'll be seeing even more sharing," says Julie Wilner, a former program manager at Google Health and the current director of product at Basis, a startup that's developing a Bluetooth-connected watch that tracks (and shares) biometric data. "There are people who want to broadcast this type of information to their social network."

Overcoming the privacy fear

Whether or not you're one of those people, it's likely your lab test results will soon be available electronically. It's all part of the government's plans to digitize medical records by 2014. President Obama's administration has allocated a whopping $23 billion in stimulus funding to make sure it meets this milestone, and the Centers for Disease Control and Prevention estimate that about half of U.S. physicians have already digitized their records to some extent. While some patients have expressed concern over data breaches and leaks, others are looking for even more ways to share their medical history. Surprisingly, not all of them belong to the younger, bare-all generation that's grown up with Facebook, Twitter and YouTube.

"Consumers over the age of 50 are the fastest growing demographic segment on social networks," says Lynne Dunbrack, an analyst who tracks the health industry for market research firm IDC. "From a health perspective there's a strong correlation between age and chronic conditions, so while these people are going to the Internet to access health information, they're also using it to connect with other patients."

While some—both old and young—are comfortable sharing their symptoms, exercise routine and heart rate online, it's likely some types of information will remain sacred.

"We're seeing a real tension between what people want to remain super private and what they want to make super public," says Hesky Kutscher, founder of Motherknows.com, a Menlo Park, Calif.-based startup that's working on an application that lets parents easily track their children's medical visits and immunization history. "What would be the upside of me sharing my kid's doctor's notes with the world? I just don't see it."

But Kutscher admits the demand to share is increasing, which is why his company will enable parents to post certain details, like their child's growth chart and developmental milestones on Facebook (where a growing number of parents are even posting ultrasound pictures of their unborn baby).

Heywood, the co-founder and president of PatientsLikeMe, says he would also consider integrating some of the content his users' post on Facebook, but only if they ask for it.

"We're pretty aggressive about telling people what we do with their data," says Heywood, whose company makes money by selling the information it collects to pharmaceutical companies, doctors and research organizations. "When you start linking with Facebook you're letting other people gain control of this information."

It may sound creepy, but sharing some aspects of you personal health record can have its advantages. For example, social pressure has been proven to be an effective incentive for those who are trying to lose weight (so posting how many push-ups you did or the number of cookies you ate could influence you to make healthier lifestyle choices). And patients with debilitating diseases can learn a lot from others who are suffering from the same illnesses.

"My family had access to all the best research," says Heywood, whose brother passed away in 2006. "But the sheer amount of what we didn't know amazed us."

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About This Author
Michal Lev-Ram
Michal Lev-Ram
Writer, Fortune

Based in Silicon Valley, Michal Lev-Ram covers enterprise and mobile technologies for FORTUNE. Prior to joining FORTUNE, she wrote for CNNMoney, Fast Company, Popular Science and other business and technology publications. She was also a staff writer at Business 2.0 and holds a B.A. in journalism from San Francisco State University.

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