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
Editors' Note and Dedication
We dedicate this work to the memory of our friend and colleague, Tom Ferguson, MD.
Before his untimely death, Tom assembled the group of advisors he dubbed the e-Patient Scholars Working Group. Several times over the years during which he was working on this White Paper, we would gather and participate in informal but intense seminars in which we would share research and ideas on the topics Tom proposed. We would read his latest version of the White Paper and give him feedback. We would exchange exciting ideas with each other and offer suggestions and encouragement for obstacles we faced in our own work. We did not expect, the last time we gathered with Tom at the Cooks' Branch Conservancy outside of Houston, Texas, in February 2006, that he would not finish the White Paper.
We did not know that Tom's fifteen-year battle with multiple myeloma would end just a few months later. When Tom died in April 2006, we grieved and vowed to finish the work to which he had dedicated his last years. We did not want his remarkable work and foresight to be lost. We continued to meet together as a group, dividing responsibility for the various chapters. Each one was assigned an editor and a reviewer. Then each chapter was read and edited a final time for continuity. We have done our best to review, fill in and assemble the pieces so that much of the work Tom did for the White Paper is represented here.
Last year as we all met together after his death, it became clear that beyond the White Paper, Tom was already thinking about some truly revolutionary concepts. The research to support or test his ideas has not yet been done, and he had barely begun to sketch them out on paper. We have only alluded to these more advanced theories in the White Paper and its Afterword. We trust that the topics we have included will offer the reader an excellent overview of the issues involved in exploring online health care in the information age.
Tom coined the term e-patients to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and the health professionals and systems that support them. We offer this definition of e-patient from Wikipedia to set the tone for the following work:
"e-Patients represent the new breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members who go online on their behalf. e-Patients report two effects of their online health research-'better health information and services, and different (but not always better) relationships with their doctors.'"
The e-Patient Scholars Editorial Team
Meredith Dreiss
Susannah Fox
Gilles Frydman
Joe and Terry Graedon
Alan and Cheryl Greene
John Grohol
Dan Hoch
Charlie and Connie Smith
March, 2007
