The Founder’s Circle is made up of the founders of the Society, but the group has no current formal role within the Society. (Specific individuals within the Founder’s Circle may, however, have a role within the Society as an active member, officer or board member.)
“Doc Tom” Ferguson (Wikipedia) envisioned health care as an equal partnership between e-patients and health professionals and systems that support them. The medical editor of the Whole Earth Catalog, he founded Medical Self-Care magazine, wrote the visionary 1996 book Health Online: How To Find Health Information, Support Groups, And Self Help Communities In Cyberspace, and authored several papers in the BMJ, as early as 2000.
A true visionary, less than a year after the Mozilla browser arrived he published a pair of slides that showed how “information age healthcare” would turn medicine on its head.
Before Tom’s untimely death in 2006 (see the obituaries in the NY Times and MedScape), he was writing his manifesto, now known as the White Paper (PDF), in consultation with the group of advisers he dubbed the e-Patient Scholars Working Group. They finished the paper and published it a year later, and in 2009 formed our Society for Participatory Medicine.
Dave deBronkart was diagnosed with advanced kidney cancer (median survival 24 weeks) in 2007. e-Patient Dave rapidly learned to use every aspect of empowerment, technology, and participatory medicine to beat the odds. A high-tech marketer in his career, he became the Society’s most outspoken patient blogger.
In early 2009 his attempt to move his personal health record data from his hospital into Google Health made front-page news in the Boston Globe and led to widespread discussion of patients’ involvement in their medical data. In 2010 he left industry and became a full time keynote speaker and health policy advisor, advocating for e-patients, health data rights, and participatory medicine.
At our founding Susannah Fox was Associate Director, Digital Strategy, for the Pew Research Center’s Internet & American Life Project and principal author of the Project’s survey reports on e-patients and online health. Susannah presents her perspective as a researcher and does not advocate for any policy or behavioral outcomes.
In 2015 she accepted the role of Chief Technology Officer at the US Department of Health & Human Services. The legacy of her Pew research lives on at the Pew Health Tips page that she created, a quick reference for her most popular findings: bit.ly/pewhealthtips
Gilles Frydman is a pioneer of medical online communities and founder, in 1995, of the Association of Cancer Online Resources, the largest online social network for cancer patients. ACOR has served over a half million cancer patients and caregivers.
As of 2016 Gilles is co-founder of SmartPatients, a next-generation patient community.
Joe and Terry Graedon write consumer health books that deal with drug and alternative therapies, write a syndicated consumer health newspaper column, and host a syndicated public radio show, all called The People’s Pharmacy. Please visit their website for more information.
Alan Greene is a Clinical Professor at Stanford University’s Lucile Packard Hospital, Chief of Future Health at A.D.A.M. Inc., co-founder of DrGreene.com, and author of several books, including Raising Baby Green. Dr. Greene has been recognized by Intel’s Internet Health Initiative as one of four pioneering Online Health Heroes “who are developing innovative and compelling new ways to use the Internet to advance public health.”
Cheryl Greene is co-founder and the executive producer of DrGreene.com. The AMA has called DrGreene.com “the pioneer physician web site on the Internet.” Together Alan and Cheryl have been providing health information and community for parents around the world since 1995.
Sarah Greene is a publishing and new media entrepreneur specializing in biology, medicine, and health, whose startups Current Protocols, HMS Beagle, and Praxis Press were acquired by Wiley, Elsevier, and Thomson Healthcare, respectively. She is currently Executive Director of Cancer Commons, a nonprofit, open science initiative dedicated to improving outcomes of cancer patients by speeding and disseminating research on targeted therapies. She was previously Editor-in-Chief of The Scientist and of its parent company, Faculty of 1000, a post-publication peer review service comprising over 10,000 scientists and MD researchers. Greene also developed content-rich websites for the New York Academy of Sciences and the New York Times, and served as Chief Content Officer at Keas.com. Greene was the founding managing editor of the Journal of Participatory Medicine.
John Grohol is a pioneer in online mental health, author, consultant, researcher and founder & CEO of Psych Central. Psych Central, founded in 1995, was recognized as one of the Top 50 Best Websites in 2008 by TIME.com. He runs two large online support communities, Psych Central Forums and the neurological support groups at NeuroTalk with a combined membership of over a half million people. Dr. Grohol is the co-author of Self-Help That Works, author of The Insider’s Guide to Mental Health Resources Online , and serves on the editorial board of the journal Computers in Human Behavior. He won the Distinguished Professional Achievement in Media Psychology award in 2011 by the American Psychological Association’s Division 46 for his leadership in helping bring psychological and mental health resources to the public. Dr. Grohol is a founding board member of the Society for Participatory Medicine, and the organization’s first treasurer. He met Tom Ferguson in the early 1990s when Tom was researching his book Health Online (1996), and helped him understand how people used the support groups available on Internet newsgroups (Usenet).
Dan Hoch is a neurologist based at the Massachusetts General Hospital and is an Assistant Professor at Harvard Medical School. An early developer of online resources for patients, Dan helped found Braintalk and is active in the American Academy of Neurology, the American Epilepsy Society, and the American Medical Informatics Association.
Jon Lebkowsky is a social media expert and strategist, cultural strategist, and social commentator. A web strategy consultant, he also writes about culture, technology, media, sustainability and other topics for various publications, has been blogging regularly since blogs first appeared, and has been involved in web strategy and development since 1992. He was involved in the early 2000s social technology conversations that led to the concept of “web 2.0.” He is cofounder of Social Web Strategies, where he does strategic consulting and coordinates social media planning and web development.
John Lester joined Linden Lab, the creators of Second Life, in 2005, bringing experience in online community development as well as a background in the fields of healthcare and education. Previously, John was the Information Systems Director for the Department of Neurology at Massachusetts General Hospital, where he pioneered the use of the web in 1993 to create online communities supporting patients dealing with neurological disorders. As a Research Associate in Neurology at Harvard Medical School, he also created online collaborative education environments for professors and students to advance the case-based teaching method in medical education. John leads Linden Lab’s customer market development in Education and Healthcare. He acts as a strategist and evangelist for people using Second Life in teaching, academic and healthcare research, medical education, simulation, and scientific visualization.
Danny Z. Sands was most recently a senior medical informatics director for Cisco, where he provided internal and external health IT leadership and helping key customers with business and clinical transformation using IT. His prior position was chief medical officer for Zix Corporation, a leader in secure e-mail and e-prescribing, and before that he spent 13 years at Beth Israel Deaconess Medical Center in Boston, where he developed and implemented numerous systems to improve clinical care delivery and patient engagement. Sands earned his baccalaureate at Brown University, a medical degree at Ohio State University, and a master s degree at Harvard School of Public Health. He did residency training at Boston City Hospital and an informatics fellowship at Beth Israel Deaconess Medical Center. He is an assistant clinical professor of medicine at Harvard Medical School and maintains a primary care practice in which he makes extensive use of health information technology. Sands is the recipient of numerous health IT awards, sits on the board of the American Medical Informatics Association, and has been elected to fellowship in both the American College of Physicians and the American College of Medical Informatics.
- Dell Medical School and the Future of Care--Jon Lebkowsky
- Participatory Personalized Medicine in Action: Pharmacogenomics in Primary Care--Ileana Balcu
- Diabetes patient leaders: apply by 2/15 for fully funded #MasterLab Leadership Institute--e-Patient Dave
- Precision Medicine For Me (a new open collaboration) launches at #PMWC17--e-Patient Dave
- A Framework for Designing Digital Health Tools with Empathy
- Electronic Screening to Increase Identification of Risk: Lessons Learned in the Implementation of an mHealth Risk Assessment Strategy in an Urban Primary Care Environment
- Use of Conjoint Analysis to Determine Patient Preferences for Surgical Treatment of Urethral Stricture Disease
- Exploring Self-Tracking as a Participatory Research Activity Among Women with Endometriosis