PatientsLikeMe Growing as Pharma Customers Boost Focus on Patients

There’s a quilt hanging on the wall at PatientsLikeMe, made with different patches of fabric from members of the firm’s online community of multiple sclerosis patients. “We have it hanging in our office because it represents so much of what our site is about—individual experiences that, when pulled together, give you a very powerful collective view of patients living with MS,” says PatientsLikeMe co-founder and president Ben Heywood.

The Cambridge, MA-based firm has stitched together a growing business by facilitating peer-to-peer interactions among patients on its social networking site, and selling anonymous data from its members to customers in the research and pharmaceutical markets. The number of patients on the site grew impressively from about 25,000 in December 2008 to more than 55,000 as of early this month (not like the eye-popping number of people on Facebook or Myspace, but significant for the healthcare field, according to Heywood). The jump in users and the overall size of its business has caused the company to expand its workforce to from 20 employees a year ago to 30 employees today, says Heywood.

Yet patient social networking sites remain in search of a solid footing in healthcare. Heywood says that PatientsLikeMe generates the kind of real-world data on the health of patients that can’t be found anywhere else. He might be right. Traditional clinical databases used to track the health of patients might not offer the type of personalized information that a patient would share among her peers on a site like PatientsLikeMe. The company’s big challenge, though, is to convince more paying customers of the value of the data its members generate. This challenge is compounded by the fact that the healthcare industry is generally loath to break from convention and adopt new technologies.

Nevertheless, PatientsLikeMe has provided services such as customized research on patient health and Web-based surveys for some of the top-20 pharma outfits in the world, Heywood says. The company doesn’t disclose the identities of all its customers, but does name the Swiss drug giant Novartis and the Google-backed personal genomics firm 23andMe among its industry partners. It also points to its work with research organizations such as the Myelin Repair Foundation, the Forbes-Norris MDA/ALS Research & Treatment Center, and the Penn State Milton S. Hershey Medical Center.

Indeed, companies have shown a willingness to pay for information gathered from PatientsLikeMe’s online communities, each of which is highly focused on serving patients with one specific or a few related diseases. Last month, for example, the company announced the launch of its 10th patient community for people with epilepsy, with biopharma company UCB already paying PatientsLikeMe for research projects focused on epilepsy patients. Brussels-based UCB is a provider of epilepsy drugs, including lacosamide (Vimpat) and levetiracetam (Keppra), and therefore has a lot to gain from access to information from the online community of patients with epilepsy.

But Heywood says that the company’s strategy for success begins with providing first patients, and then its customers, with valuable services and information. To focus on the needs of patients, the firm employs nurses and clinical specialists to provide users with tools that measure, say, their mood if they suffer from depression. And the firm de-identifies the data it gathers from patients before it is sold to customers like UCB. “One of the things that fundamentally drives this company is the belief that if you give patients the tools? to put them in control of their healthcare,” he says, “then all of the industry constituents will come to you because they want access and they want to engage with those patients and that information.”

PatientsLikeMe is already having a significant impact on decisions its members are making about their healthcare, Heywood says. On average, according to a recent survey by the company, 10 percent of users said they had changed doctors as a result of the insights gained from their fellow patients. Patients with depression, for example, have told the firm that the feedback or information they took from other members of their mood conditions community caused them to seek medical treatment. Others, Heywood says, learn from their peers on the site that they might not need to go to the hospital as often as they had been going.

In some corners of the medical establishment, there’s still a high degree of skepticism about the value of online information available to and generated by patients, and even some concern about potential dangers facing people who make important decisions about their care without consulting a doctor. Yet Heywood says that some doctors have found that the patient profiles have helped them make decisions for those in their care. (Cambridge-based Sermo, the social networking site for doctors, has also shown that an increasing number of physicians are open to using social media for their jobs.) The company also makes presentations at academic meetings, building its credibility with healthcare professionals.

It’s tough to identify exactly which companies are competitors of PatientsLikeMe, because the firm has a unique business model. But there are certainly a bunch of Web-based businesses competing to gain the attention of patients, whether it’s to sell advertising to medical products manufacturers, build online communities that generate marketable data, or other business strategies. Perhaps the clearest competitive threat to PatientsLikeMe is San Francisco-based Keas, which was founded in 2008 by Google veteran and company CEO Adam Bosworth. This week Keas, whose site gives users a dashboard where they can track their health, announced a collaboration with New York-based Pfizer [[NYSE:PFE). The drug giant is promoted the use of Keas’s technology to enable healthcare professionals to design treatment plans for patients.

One thing that appears to differentiate PatientsLikeMe is the emphasis it puts on catering to people with specific diseases. The company now operates 10 separate communities that represent 18 diseases. It’s also well known that Heywood and his brother James Heywood, the chairman of PatientsLikeMe, co-founded the company in 2004 while their family was aggressively searching for ways to improve the life of their brother Stephen, who died in 2006 from the neurological disorder ALS (amyotrophic lateral sclerosis).

There are high expectations for the company among patients as well as the firm’s big-named investors. Ben Heywood says that the company doesn’t disclose how much money it has raised from investors (though he did acknowledge reports that the firm took in $5 million in a Series A round of funding in 2007). Yet the company is more open about the identities of its backers, which include Internet commerce pioneer Jay Tenenbaum through his Silicon Valley firm CommerceNet, the New York private equity firm Invus, Omidyar Network, the Redwood City, CA, the philanthropic investment group started by eBay founder Pierre Omidyar, and Collaborative Seed and Growth Partners, based in the Boston area.

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