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
Acknowledgements
Special thanks to my long-time teacher and mentor Lowell S. Levin, Professor Emeritus at the Yale School of Public Health, who suggested that doctors might not have all the answers. Thanks to Stewart Brand, Howard Rheingold, Kevin Kelly and their colleagues at the Whole Earth Catalog who invited me to review medical books and edit the self-care sections for a number of different Whole Earth publications. Thanks to Michael Castleman and Carole Pisarczyk, my partners at Medical Self-Care Magazine. I think we may have started something. And thanks to Ed Madara, director of the American Self-Help Clearinghouse, who invited me to look in on some of the early dial-up self-help bulletin boards nearly twenty years ago.
I owe a great debt of gratitude to my fellow members of the e-Patient Scholars Working Group for their willingness to join me in the difficult process of rethinking some of our most fundamental assumptions about doctors and patients, for walking so fearlessly and brilliantly into the unknown, and for providing a continuing supply of advice, encouragement, and support as this White Paper moved toward its final form. A struggling author could ask for no finer friends than these: Elie Anaissie, Lew Engle, Susannah Fox, Gilles Frydman, Joe Graedon, Teresa Graedon, Alan Greene, Cheryl Greene, Jan Guthrie, Daniel Hoch, John Lester, Ed Madara, Lee Rainie, Richard Rockefeller, Danny Sands, Charlie Smith, and Connie Smith.
And all e-patients-and their professional allies-owe more than we may realize to the creators of the Internet, Vinton Cerf, Leonard Kleinrock, Larry Roberts and others, to Tim Berners-Lee, who not only created the World Wide Web, but left it in the public domain, for all to use freely; to Berners-Lee, Esther Dyson, Pattie Maes, and their colleagues at ICANN and the Electronic Frontier Foundation, and other organizations who work to keep the net free, and the many nameless nerds who labor long and hard to make the Internet a safe and inviting place for those who are trying to do good.
The Robert Wood Johnson Foundation provided generous financial support for this project.
Last but not least, my wife, Meredith Dreiss, has offered me unstinting support and love throughout this long project. She has stood by me through my long illness and provided an opportunity for the "e-patient mafia" to gather regularly at Cook's Branch Conservancy.
