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Unleashing Health Data: PatientsLikeMe Rewrites the Rules to Find New Cures

by Malorye Allison

As Web 2.0 tools infiltrate health care, some surprises are in store. PatientsLikeMe.com highlights one of the big ones: Here’s a site that extols the virtues of sharing your health data, warts and all so to speak, with as broad an audience as possible.  The patients use aliases, but they all share detailed medical data with each other, and 10% of them open up their data to the whole world.

“We flip the whole privacy thing on its head,” Benjamin Heywood, one of the site’s founders, told me last week.  The notion that people wouldn’t dare share health information was one of the early obstacles for social networking in health care. PatientsLikeMe has the most daring and ambitious model, but a flurry of other similar sites, including Trusera.com and HealthCareScoop.com have followed.

PatientsLikeMe differs from most of these in a critical way.  This is not what you might expect it to be – a chummy site where you can chat with numerous fellow sufferers about what it took to get your shingles properly diagnosed and why you think Vitamin C supplements helped the most to control them. 

At PatientsLikeMe, people do give each other support, but they also contribute real, measurable data, including symptoms, and effects of a range of interventions, including test scores and lab data, depending on the condition.The idea of wide-open data sharing is part of the company’s philosophy:  “When patients share real-world data, collaboration on a global scale becomes possible,” it reads on the website.

That data is the kind researchers can actually use in studies.  And that’s the site’s unique business model – partnering to do real research. The site is poised to offer a new way to do clinical trials and disease management.A quick tour of the site brought me face-to-face thousands of people and their data – the drugs they are taking, how their disease is progressing, and myriad other possible details, such as whether the patient said a prayer that night.   Many of the patients include real photos of themselves. 

 Clicking through it, at first I was very surprised at how much people were willing to reveal. But I’ve heard patients gripe about the downside of privacy before. Many want more people to know about their problems. They think that’s the best way to find real solutions more quickly. The sites’ founders agree. 

“The site makes it easy to aggregate patient experiences,” Heywood says.  “We are explicit and transparent, and by engaging patients in data sharing, we’ve found a way to engage industry as well.” 

PatientsLikeMe only has five groups running so far – ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), HIV, multiple sclerosis, mood disorders, and Parkinson’s disease, but they have just over 17,000 patients contributing to the site and Heywood estimates that in 3 to 4 years they will have the equivalent of “200 Framingham Heart studies” going on, involving about one million patients.

The site has several partners, including Novartis, and some intriguing findings already coming in.  Recently the site was able to rapidly accelerate research into a potential therapy for ALS — a rare but lethal neurodegenerative disease.  ALS was the site’s founding group: The company was formed in part to try and help one of Heywood’s brothers who was suffering from the disease.

The site already has over 2,000 ALS patients contributing data, and was in a good position last winter a when a study came out on the promising effects of using lithium, an old standby psychiatric treatment, to slow ALS.  That study looked at about 40 patients who were using lithium in combination with the only other FDA-approved drug for this condition, riluzole. When the study came out, only about 25 ALS sufferers on PatientsLikeMe were taking the drug. 

Within just a few months, however, that number has soared up to 250 and the site is effectively carrying out its own clinical trial.

“Now we have data on all those patients, blood levels of the drug, side effects,” Heywood says. So PatientsLikeMe and its partners will be able to take a much closer look at lithium’s effectiveness.

It’s easy to find problems with this approach, but traditional clinical research is itself fraught with many ghastly problems, including massive costs, a painfully slow trajectory, and a lot of cumbersome “privacy” issues. Meanwhile, we’re at the point where people are increasingly skeptical about what traditional research finds. Merck’s ill-fated Vioxx, for example, was the subject of countless traditional trials before it’s dangers were revealed.Another intriguing finding is that members of the site’s Mood Disorders community are finding that they are spending less time in the hospital since joining the group. 

 “We think this is potentially a very effective disease management platform,” says Heywood. “Health plans have very few good options with mood disorders, if this works it’s going to be attractive.”It’s far too early to call PatientsLikeMe a real business success, but at least the site is teaching us some important lessons.  Clearly, everything we thought about privacy may not be true. Maybe it’s time to rethink some of our other preconceived notions about health care as well?For more information about that lithium study, go here.

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