A View from Susan Young Rojahn
PatientsLikeMe Gives Genentech Full Access
The most extensive collaboration between the patient social network and a drug company to-date is likely to be just the first of its kind.
PatientsLikeMe, the largest online network for patients, has established its first broad partnership with a drug company. Genentech, the South San Francisco biotechnology company bought by Roche in 2009, now has access to PatientsLikeMe’s full database for five years.
PatientsLikeMe is an online network of some 250,000 people with chronic diseases who share information about symptoms, treatments, and coping mechanisms. The largest communities within the network are built around fibromyalgia, multiple sclerosis, and amyotrophic lateral sclerosis (ALS), but as many as 2,000 conditions are represented in the system. The hope is that the information shared by people with chronic disease will help the life sciences industry identify unmet needs in patients and generate medical evidence, says co-founder Ben Heywood.
The agreement with Genentech is not the first collaboration between a life sciences company and PatientsLikeMe, named one of 50 Disruptive Companies in 2012 by MIT Technology Review, but it is the broadest. Previous collaborations were more limited in scope, says Heywood, focusing on a particular research question or a specific disease area. The deal with Genentech is an all-encompassing subscription to information posted by the entire PatientsLikeMe population, without the need for new contracts and new business deals if a research program shifts direction from its original focus. “This allows for a much more rapid real-time use of the data,” says Heywood.
In 2010, PatientsLikeMe demonstrated some of its potential to advance medicine. With data from its community of ALS patients, who suffer from a progressive and fatal neurological disease, the company could see that a drug under study was not effective (see “Patients’ Social Network Predicts Drug Outcomes”). Those findings were corroborated by an academic study published that year. Another area of medicine the network can shed light on is the quality of care patients receive, including whether or not doctors are following guidelines established by medical societies for how patients are treated. “As we try to shift to patient-centered health care, we have to understand what [patients] value,” says Heywood.
In exchange for an undisclosed payment to PatientsLikeMe, Genentech has a five-year subscription to the data in the online network. The data will be de-identified– that is, Genentech will not see patient names or email addresses. Heywood says his company is hoping to establish broad agreements with other life sciences companies soon.