From
- Editors' Note and Dedication
- Acknowledgements
- Foreword by Lee Rainie and Susannah Fox
- Preface
- Introduction
- Hunters and Gatherers of Medical Information
- Content, Connectivity, and Communityware
- Patient-Centered Networks: Connected Communities of Care
- The Surprisingly Complex World of e-Communities
- e-Patients as Medical Researchers
- Learning from e-Patients
- The Autonomous Patient and the Reconfiguration of Medical Knowledge
- About the Author
- About the e-Patients Scholars Working Group
Contents |
The e-Patient Scholars Working Group
For more than five years Tom Ferguson gathered together a group of friends, colleagues and thought leaders in the field of online health. This collaboration was helpful for Tom as he formulated his thoughts about e-patients and this White Paper. It was enormously exciting for the rest of us who got to exchange ideas with people outside our usual contacts. Tom fed us, entertained us, stimulated us and helped us imagine a new paradigm for health care.
Tom's death devastated us. He was the glue that held us together. We undertook the completion of this White Paper as an expression of our love for Tom and respect for his vision. We hope we have captured the critical elements that Tom had identified.
The Working Group
Susannah Fox, Director of Research for the Pew Internet & American Life Project and principal author of the Pew Internet & American Life Project's survey reports on e-patients and online health.
Gilles Frydman, President of the Association of Cancer Online Resources www.acor.org, the largest online support group for cancer patients.
Joe Graedon, MS, pharmacologist & Teresa Graedon, PhD, medical anthropologist. Together they write consumer drug books and a syndicated consumer health newspaper column and host a public radio show, all called "The People's Pharmacy." (www.peoplespharmacy.com)
Alan Greene, MD, Stanford pediatrician & Cheryl Greene, web site producer. In 1995 they launched their pediatric web site, www.drgreene.com, the first physician Web site on the Internet. 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."
John Grohol, PsyD, Pioneer in online mental health and founder of PsychCentral.com. He co-founded Mental Health Net in 1995, one of the largest mental health portals at that time. Dr. Grohol is the author of The Insider's Guide to Mental Health Resources Online (Guilford, 2003).
Dan Hoch, MD, Massachusetts General Hospital. Leading physician pioneering online support group for his neurology patients.
John Lester, Founder, www.braintalk.org. John is now working with Linden Labs in Second Life as Community Manager, helping to build better tools for communication and education. More information at: http://secondlife.com/education. Also visit: http://brain.hastypastry.net/OSN_2005_Second_Life/
Daniel Z. Sands, MD, MPH, Senior medical informatics director in Cisco's healthcare group. Also practices at Division of General Medicine at Beth Israel Hospital and teaches at Harvard Medical School. The leading expert on doctor-patient e-mail.
Charles Smith, MD, Medical Director, University of Arkansas for the Medical Sciences (UAMS).
Connie Smith, cancer patient at the UAMS Cancer Center.
Additional Contributors
Elias Anaissie, MD, Professor of Medicine at the University of Arkansas for the Medical Sciences.
Anna Bryan, assistant and organizer par excellence
Jan Guthrie, MLS, leading freelance librarian for e-patients (www.thehealthresource.com)
Jon Lebkowsky, CEO of Polycot Consulting and cofounder of EFF-Austin, originally a chapter of the Electronic Frontier Foundation and then an independent organization
Edward Madara, Director, American Self-Help Clearinghouse (www.selfhelpgroups.org)
Karen Parles, Webmaster, www.lungcanceronline.org
Lee Rainie, Founding Director of the Pew Internet & American Life Project.
Richard Rockefeller, MD, Health Commons Institute, Falmouth, ME
