At PatientsLikeMe.com, people share data about their illnesses, the drugs they're taking, and the effects (and side effects) of their treatments. In this conversation, co-founder Jamie Heywood tells host Jon Udell that selling this data to drug companies is more than a good business. It aims to put patients into more direct contact with those companies, and help ensure that drug discovery and development meets their needs.
An MIT engineer, Jamie Heywood entered the field of translational research and medicine when his brother Stephen was diagnosed with ALS in 1998 at the age of 29. With experience in design, information technology, systems modeling, neuroscience and industrial engineering, Jamie brings a unique perspective to drug discovery and medicine. The scientific and business innovations he developed at ALS TDI and PatientsLikeMe have been transforming the intersection of biotechnology and pharmaceutical development, personalized medicine, and patient care.
Currently, Jamie serves as chairman of PatientsLikeMe, where he provides the scientific vision and architecture for its patient-centered medical platform. He co-founded the company in 2005 with his youngest brother, Benjamin, and friend, Jeff Cole. Named one of “15 companies that will change the world” by CNNMoney, PatientsLikeMe is a personalized research and peer care platform that allows patients to share in-depth information on treatments, symptoms and outcomes. This novel open model allows clinicians, providers, and the pharmaceutical industry to better understand diseases and the patient experience. Patients experience improved care and the ability to actively partner with industry to accelerate and influence the development of new treatments and biomarkers.
In 1999 shortly after Stephen was diagnosed, Jamie founded the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company, where he served as CEO until 2007. Pioneering an open research model and an industrialized therapeutic validation process, Jamie led ALS TDI to become the world’s largest and most comprehensive ALS research program. The journal Nature captured succinctly the broader implications of ALS TDI’s program, saying it succeeded in “prompting a broad reappraisal of the way that drugs are tested in animal models of neurodegenerative disease in general.” The comprehensive in-vivo validation program Jamie developed was unable to replicate the published preclinical studies of the field that lead to human trials calling into question the standards that allowed many drugs to be tested on patients. Today, ALS TDI continues to grow and runs large-scale discovery and informatics program focused on finding an effective pathway for treating ALS.
Jamie is a frequent speaker, media pundit and an active investment advisor. His work has been profiled in the New Yorker, New York Times Magazine, BusinessWeek, 60 Minutes, Science, Nature as well as in Pulitzer Prize winner Jonathan Wiener’s biography, His Brothers Keeper and the Sundance award-winning documentary, “So Much So Fast.”
This free podcast is from our Jon Udell's Interviews with Innovators series.