PatientsLikeMe signs five-year data access deal with Genentech

By Jonah Comstock
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patientslikemeBoston-based PatientsLikeMe, a hub for crowd-sourced patient data and an open research platform, has announced its most wide-reaching pharma partnership yet, a five-year agreement to share data with Genentech, a division of Roche.

"They are a forward-looking company in the health IT space, and ... I think they're really looking at new forms of evidence and how that can improve their business and impact their products and services," PatientsLikeMe President and Co-founder Ben Heywood told MobiHealthNews. "They are a patient-centered business and they're really trying to improve their leadership in that arena."

PatientsLikeMe has opened up its data to pharmaceutical companies several times in the past. They worked with Sanofi to recruit for clinical trials a year ago, a similar arrangement to one Merck made with the company in August of 2012. Last summer, PatientsLikeMe announced a partnership with clinical consulting firm inVentiv Health to use the platform for clinical trial recruitment for InVentiv’s pharmaceutical clients. They also launched an open-participation research platform with a grant from the Robert Wood Johnson Foundation last year. 

However, past partnerships have all been limited in scope to a particular product or disease area. The Genentech deal, which offers the pharma company access to all PatientsLikeMe's deidentified data for an undisclosed fee, is more wide-reaching.

"[The disease partnerships] have been great and we still do those today," Heywood said. "But one of the challenges we've had is we'd be working deeply in a specific disease space and either someone else in the company in a different area would want to work with us, or that disease area would be deprioritized or drop out of the portfolio, because they change over time. We didn't have a way of moving or shifting the relationship beneath those needs."

The partnership will allow PatientsLikeMe to move more into oncology, an area of focus for Genentech, than they have been in the past. Genentech will have access to to PatientsLikeMe’s network "to enable cross-sectional research and broader discovery of patient insights," according to the press release. The company will also be able to search the data set more effectively and start their own research projects on the platform. They will also be able to use PatientsLikeMe's network to both inform patients about clinical trials and iterate clinical trial design with patient input.

Heywood said that while some patients might be wary of sharing their data with pharma companies, PatientsLikeMe has always been transparent about the way its patients' data is used -- and many are excited to share their data.

"I think for many of our users that's part of the value proposition," he said. "They're not just using [the network] for personal understanding. They also understand that their data can really have greater meaning and impact the way healthcare is delivered in the United States in a much more patient-centered way."