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
Contents |
Chapter 1
Hunters and Gatherers of Medical Information
Topics Covered
This chapter lays the foundation for the body of the book, opening with two compelling stories of what we might today call "e-patient pioneers" - those individuals who, with no precedent, took matters into their own hands, embodying the e-patient idea that they (and you and I) have every right to know everything they can about their health - and sometimes they might even do a better job than the doctors. If also subdivise the patient population in specific categories, from teh completely passive to the entirely empowered and engaged.
Sections
- Edward Murphy's incredible story of trying to get information about his condition - he had to impersonate his doctor (1994)
- An unusual sloshing sound inside her head: Marian Sandmaier diagnoses her daughter's severe headaches, when two specialists had failed to. (1999)
- Turning to Dr. Google: research from the Pew Research Center's Internet & American Life Project, documenting that patient googling is now dominant: the great majority of Internet users look for medical information. (That seems obvious today, but it was radical and almost verboten when Tom Ferguson started his work.)
- Three types of e-patients - the well, the newly diagnosed, and the chronically ill - and more Pew research on the different ways they use the Internet
- The Accepting, the Informed, the Involved, and the In Control: an intriguing way of viewing different people's Internet use based on their attitudes and how deeply in trouble they are.
In that last section, check out Group IV: "...believe in making their own medical choices... will often insist on managing their own medical tests and treatments as they think best... may attempt to help to keep their clinicians up to date on new treatments and studies.... may start, manage, or contribute to local support groups, online communities, blogs... ". Remember that Tom wrote this chapter in early 2000, long before anyone used the terms social software or social networks.
