Download E-Patients White Paper PDF

TitleE-Patients White Paper
File Size984.6 KB
Total Pages126
Table of Contents
                            Cover Page
Title, Dedication Epitath & Table of Contents
Editors Notes & Dedication
Chapter 1: Hunters & Gatherers
Chapter2: Content, Connectivity, and Communityware
Chapter 3: Patient-Centered Networks
Chapter 4: The Surprisingle Complex World of e-Communities
Chapter 5: e-Patients as Medical Researchers
Chapter 6: Learning from e-Patients
Chapter 7: The Autonomous Patient
About the Author
About the e-Patients Scholars Working Group
Document Text Contents
Page 1

“I felt I was looking over Thomas Paine’s shoulder”
- Elliot M. Stone

Page 2

e-patients: how they can help us heal healthcare
Tom Ferguson, MD
with the e-Patients Scholars Working Group

Supported by Robert Wood Johnson Foundation Quality Health Care Grant #043806
© 2007 Tom Ferguson, MD. This work is licensed under the Creative Commons Attribution-Noncommercial-ShareAlike 3.0 License. To
view a copy of this license, visit; or, (b) send a letter to Creative Commons, 543
Howard Street, 5th Floor, San Francisco, California, 94105, USA. •

Page 63

Chapter 3: Patient-Centered Networks


We are e-mailing this information because we thought you would like to
know—and because it is stressful and upsetting for us to have to
explain this frightening disease over and over again to all our caring
family members and friends. We will send further e-mail updates to
keep you up to date on the latest developments.

—Judy and Lenny Nagle

This e-mail message was sent to about a dozen close friends and family members in

April 2001. Up to this point, Judy, a family therapist, had been dealing with several

troubling chronic conditions, but this was the beginning of the end. Over the following

sixteen months, Lenny sent out a total of 128 “Judy Updates” to a list that ultimately

grew to include more than 80 names—other family members and friends, new friends,

health workers they met and befriended in the course of Judy’s care, and a variety of

others. As the mailing list grew, its members became the Nagles’ patient-centered

support network—a very different entity than the better-known disease-specific online

patient communities.

When I asked Lenny what his regular “Judy Updates” and the community that grew up
around them had meant to him, and to Judy, he replied as follows:

It was wonderful to be able to share our struggles and triumphs with a
loving, supportive group of friends who were eager to hear from us.
And since our friends knew exactly what we are going through, we
knew that we were not alone.

We didn’t have to spend hours and hours on the phone, bringing
everyone up to date. And since some of our medical experiences had
been so unpleasant, it would have been upsetting to relive them over
and over.

Some list members combed the Internet for information that could be
helpful in managing Judy’s illness, providing information, referrals, and
advice. The physicians on the list sent medical information and advice.
Others volunteered to drive Judy to appointments, take her out to lunch
or shopping, cook her dinner, give her massages, or take me skiing or
sailing. Others provided continuing emotional support, while many
friends who lived nearby helped me coordinate the day-to-day details of
home care, housecleaning, grocery shopping, hospital visitation, and
transportation to medical appointments. Others sent flowers, candy,
books, cards, and other gifts. The support we received was incredible.

During the last year of Judy’s illness we weren’t able to socialize much.
So it was great to know that we hadn’t fallen off the radar screens of
our many friends with their busy lives.

Additional excerpts, completing the story, can be found at the end of this chapter.

Web Sites that Support Patient-Centered Online Health Networks

Page 64

Chapter 3: Patient-Centered Networks


A variety of other online systems has evolved to support private online health networks

for the seriously ill. Dr. Rochelle Stark was halfway through her general surgery

residency at St Francis Medical Center in Trenton, NJ, when she was diagnosed with

Hodgkin's Lymphoma. She now uses the services of Care Pages

(, a service provided by her local hospital, to share her

journey through the long process of diagnosis and treatment with friends and family.

While most Care Pages are private, Dr. Stark has volunteered to make her Care Page

public, helping colleagues and other patients appreciate the importance and potentials of

patient-centered networks for those facing a serious illness. The Patient Update section

of her home page offers regular updates on how she is doing and feeling, while the

Message Board section contains dozens of publicly accessible messages—from friends,

family members, local medical colleagues, hospital and clinic staffers, as well as from

many cancer patients who have found her via the Internet. A Photo Pages section is also


Why Personal Online Health Networks Have Received So Little Attention

We found many examples of personal networks that had become patient-centered

networks. But we found very little scholarly writing on this topic. At one point, we turned

to a professional online researcher at Google Answers ( for

help. You can read our original question and all searches and discussion relating to

those searches at:

At one point, our Google Answers researcher commented: “I was intrigued by your

question because I have personal experience in using [this type of] online resource

[myself]. Last year it became clear that my parents needed a great deal of help with

some health problems… I set up a Yahoo! Group for my four siblings and me… All

five of us were determined to pitch in with getting through the crisis but we all had

many other obligations. [With the private group] we could pool all the information we

were gathering and make it all available… so we wouldn’t have to keep repeating the

same information, play telephone tag, or keep track of the huge volume of e-mail we

were generating. [With] all of the correspondence in one place, we could easily

monitor who was doing what. We had a calendar showing all the medical

appointments and posted complete lists of my parents’ doctors and medications.

Page 125

About the e-Patients Scholars Working Group

About The e-Patients 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.

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, Founder & President of the Association of Cancer Online Resources, 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."


Alan Greene, MD, Stanford pediatrician & Cheryl Greene, web site producer. In 1995

they launched their pediatric web site,, 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

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.

Page 126

About the e-Patients Scholars Working Group

John Lester, Founder, 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: Also visit:

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


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

Lewis Engle, PhD, Clinical Pshychologist. Co-author with Tom Ferguson of Imaginary

Crimes: why we punish ourselves & how to stop

Jan Guthrie, MLS, leading freelance librarian for e-patients


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 (

Karen Parles, Webmaster,

Lee Rainie, Founding Director of the Pew Internet & American Life Project.

Richard Rockefeller, MD , Health Commons Institute, Falmouth, ME

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