PatientsLikeMe Sheds New Light On Genetech Deal

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PatientsLikeMe, a patient social media site that builds disease-specific digital communities, made news last month when it announced a new data sharing deal with drug manufacturer Genetech. The deal provides Genetech with unrestricted access to all of the de-identified data PatientsLikeMe is collecting from its users for a five-year period.

The deal represents a new monetization strategy for PatientsLikeMe, a company that has done work with pharmaceutical companies in the past, but in a different capacity. Prior to the announcement, PatientsLikeMe monetized through three business channels, all marketed to pharmaceutical companies. The first service included building disease-specific communities at the request of a drug manufacturer, so that they could study the long-term effects of the disease, and understand what aspects of the disease, and the medications used to treat it, patients were struggling with most. The second offered survey and polling services that would allow drug manufacturers to study individual patient populations within the PatientsLikeMe network. The third monetization strategy involved building predictive tools that used aggregated data from its communities to calculate individual patient outcome probabilities based on a variety of secondary risk factors.

Now, PatientsLikeMe has unveiled what it calls its Global Network Access service, and Genetech is its first customer. The new service provides Genetech access to data being generated by 250,000 users and spanning 2,000 diseases. PatientsLikeMe members use the platform as not only a social gathering place, but also as a longitudinal disease tracker. As such, PatientsLikeMe solicits a treasure trove of information from its users, asking questions like: what medications and supplements patients are taking, if they are working, feeling depressed, and what symptoms they are struggling with. Patients also have the ability to upload relevant lab values to the platform.

This week, PatientsLikeMe CEO Jamie Heywood sat down with Nicholette Zeliadt from Nature to discuss the deal, its impact on the company’s business model, and where he sees the company 10 years from now.

Heywood frames the deal as a collaborative effort to fundamentally disrupt the way that pharmaceutical companies evaluate new drug opportunities. He said, “Let’s be ambitious and talk about how, by understanding the patient’s experience, we can invent better ways of doing discovery in health care.” Based on this goal, the two sides worked out a five-year, unrestricted access agreement that would allow them to explore different ways of using the data as they moved forward. His hope is that through this work, he will create a new product that will appeal to other pharmaceutical companies.

Heywood does report that Genetech’s ambitions outstrip the current functionality of the site, and that there will be significant legwork needed to bring its cancer-specific communities up to speed with the kinds of studies that Genetech is looking for. “Cancer treatment involves combination therapies in specifically timed regimens, and collecting that data—the general regimen and the variations in it—is a complicated user experience and data architecture problem…we need to expand the technical capability of the system to manage oncology,” he said.

In the future, Heywood sees PatientsLikeMe staying the course, but growing its user base to include hundreds of millions of patients, representing tens of thousands of conditions. He hopes to eventually integrate the platform with the provider side of the equation so that PatientsLikeMe can extract and leverage EHR data and pharmaceutical companies can have a full spectrum picture of the impact individual diseases, procedures, and medications are having on the patient’s overall quality of life.


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