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
