Partnering with patients in drug development

A new collaboration between Genentech and PatientsLikeMe will help give patients a stronger voice in drug discovery and development.

PatientsLikeMe, an online network of more than 250,000 people with chronic diseases, has signed a five-year agreement providing Genentech—and Roche—the opportunity to use the group’s Global Network Access, a new service that delivers a range of data, research and tools. In turn, PatientsLikeMe is now significantly expanding its patient network in oncology.

Founded in 2004 by two brothers and a family friend, PatientsLikeMe has the goal of improving healthcare through patient-centric sharing, support and research. To date, its quarter-million members have shared more than seven million treatment and symptom reports on more than 2000 medical conditions. Data from PatientsLikeMe has been included in 50 published research studies.

PatientsLikeMe are very thoughtful in the way they collect data.
David Purdie

“PatientsLikeMe is more than a forum for patients to share their stories. The organization encourages patients to be involved in clinical research. They see patients as being partners in drug discovery and development and they are very thoughtful in the way they collect data,” says David Purdie, Genentech Head of Quality of Care and Patient Access in U.S. Medical Affairs.

Embedding the patient perspective and experience into clinical trials is an ongoing goal for Roche and is part of the RETHINK D and Trials2Patients initiatives. The Genentech teams involved in the collaboration are actively sharing information with other Roche drug development teams around the world.

“Overall, less than five percent of patients participate in clinical trials,” David observes. “There is a huge opportunity for patients to become much more involved.”

As a specific example of how the collaboration could enhance clinical trials, David cited recruitment for a study on idiopathic pulmonary fibrosis (IPF), a disease in which tissue deep in the lungs becomes thick, stiff and scarred over time, making it difficult to breathe. What causes IPF is still unknown. The average patient is a man around 75 years old, which is not the usual patient likely to be active online.

You are thinking about evidence in an innovative, creative way.
Ben Heywood

“PatientsLikeMe, however, has a community of more than 2000 IPF patients,” David says. “And they are extremely engaged in the network. We surveyed them and in about thirty days, we got information that has helped inform the clinical study.”

For PatientsLikeMe, the relationship with Genentech has been very positive, notes co­founder Ben Heywood.

“It’s exciting that you are clearly thinking about evidence in an innovative, creative way,” Ben tells myRoche. “And not only for new clinical trials—this exchange will also help get more power out of the data from previously run trials.”bt

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Tags: Partnering, Sustainability, Partnerships