About the Keynote Speaker
Co-Founder and Chairman, PatientsLikeMe.
Founding Director, ALS Therapy Development Institute
Monday, June 16 | 2:30PM PT
Jamie Heywood is one of the foremost practitioners using technology to transform the future of healthcare. He is the founder of PatientsLikeMe, an innovative web community that allows patients to pool their experiences of disease and treatment. He is also the founder of ALS TDI, the world’s first non-profit biotechnology company.
Jamie is a leader in engaging patients, understanding their needs, and in applying entrepreneurial smarts and drive to improving the treatment and delivery available to them. He is a passionate believer in transparency and collaboration.
PatientsLikeMe is an innovative, bottom-up approach to both patient support and medical research. The over 45,000 patients with accounts on its website can log, in very fine detail, the progress of their disease, their treatments and prescriptions, any side effects they experience, and much more. This has two radical consequences. First, patients can look at each others’ logs and even message each other to learn about the real-world experience of patients like them. Second, this creates a treasure trove of data about a wide range of illnesses and treatments far beyond what can be captured in traditional clinical studies. It’s a groundbreaking approach that is speeding up the pace of research, democratizing patient data, and improving the dialogue between patients and physicians.
Jamie founded ALS TDI, the world’s first non-profit biotechnology company, following his brother Stephen’s diagnosis of ALS (Lou Gehrig’s disease) in 1998. Since then, ALS TDI has broken new ground on many fronts and has become recognized as one of the most promising and innovative research organizations. Its achievements include an industrialized therapeutic validation process and one of the world’s leading ALS drug discovery programs. It was the first organization to run an open research program, posting the results of its studies in real time.
Jamie’s work has been the subject of His Brother’s Keeper, a book by Pulitzer Prize-winning author Jonathan Weiner, and So Much So Fast, a Sundance award-winning documentary. He has also been profiled in The New Yorker and 60 Minutes.
An MIT engineer, he is an active investor and advisor to startups, companies, and non-profits working to improve the way that biomedical research is conducted.