This breakout brought together 5 companies focused on ending the isolation so often experienced alongside an illness. Through the development of online communities, patients can access new support groups, educational resources, and advice that was never available to them before. In an age of online communities that boost your ego, Health 2.0 is excited to present the online communities that can boost your health and wellness.
The new health care environment is continually moving into the hands of the individual consumer. The New Environment for Better Health Care Decisions, co-moderated by Indu Subaiya and Matthew Holt, addressed the issues and benefits of the integration of consumer data with clinical experiences. Ryan Beckland from Validic introduced the session as a sponsor. Speakers included Susannah Fox, Tim Kelsey, Neal Sofian, Jamie Heywood, Amy Cueva, David Whitlinger, and Lygeia Ricciardi. Demos exemplifying this shift included Dossia, Fitbit, Mana Health, and HealthifyMe.
Thought there wasn’t more you could know about PatientsLikeMe? At Health 2.0 this fall, Brad Gescheider demonstrated the Open Research Exchange, an online platform- funded by a big RWJF grant – that collects and publishes patient created information about their experiences with clinical research. The platform gives real-time feedback along with survey statistics.
Jamie Heywood founded PatientslikeMe with brother Ben and friend Jeff Cole when brother Stephen was suffering from ALS. The family’s remarkable story was captured in the documentary So Much So Fast. PatientslikeMe has since expanded from ALS to many other conditions, and now has over 45,000 patients sharing information in a radically open way. Jamie demonstrated the new Open Research Exchange platform, which shows various studies informing patients of treatments which work and gives more information into those conditions.
The advancement and popularity of patient communities online is an international phenomenon. This panel examines communities in different cultures, languages and context, and shows what impact they have on care delivery in different countries-and what the internationalization of information means for patients and doctors.
The Data Drives Decision was moderated by Indu, with panel speakers such as Jamie Heywood (Co-Founder and Chairman, PatientsLikeMe), David Hale (Project Manager, National Library of Medicine, National Institutes of Health), Hugo Stephenson (Chief Executive Officer and Founder, iGuard), Mark Walinske (Chief Executive Officer, Boundary Medical), and Daniel Palestrant (MD, Chief Executive Officer and Founder, Sermo).
Ben Heywood, CEO, PatientsLikeMe | America
Ben founded PatientslikeMe with brother Jamie and friend Jeff Cole, when his brother Stephen was suffering from ALS. The family’s remarkable story was captured in the documentary So Much So Fast. PatientslikeMe has since expanded from ALS to many other conditions, and now has over 45,000 patients sharing information in a radically open way. Many of these patients are involved in ongoing studies such as their new community research venture into Epilepsy with uCb.
Jamie Heywood, Co-Founder & Chairman, PatientsLikeMe
Jamie Heywood, the Co-Founder and Chairman of PatientsLikeMe, shares how patient data collection, analysis and presentation have brought together 45,000 users who are tracking and sharing information about 19 conditions in a radically open way.
Online social networks in health are changing rapidly. Less than five years ago the transformation from simple bulletin boards and listservs was just underway. Now online communities are becoming robust tracking tools for longitudinal data that can be mined for clinical insights and therapeutic activity. The traditional health care system is beginning to take notice and test the integration of online communities in their programs. How will this evolve in the next few years? Benjamin Heywood (President and Co-Founder, PatientsLikeMe), Gideon Mantel (Co-Founder and Chairman of the Board, First Life Research), and Gilles Frydman (Founder, ACOR) come together in this panel to discuss their predictions.