March 2008

Grant Results

SUMMARY

From 2002 until his death in 2006, Tom Ferguson, M.D., a pioneer in the field of online health, worked with a group of researchers, developers and leaders in the field to develop a white paper on e-patients and their impact on health care and medicine.

Key Results

Due to illness, Ferguson was unable to complete the full scope of work as originally proposed.

Funding
The Robert Wood Johnson Foundation (RWJF) provided a $93,356 grant to support this unsolicited project. (Commonweal acted as the project director's fiscal agent for the grant.)

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THE PROBLEM

Approximately 98 million Americans, or 86 percent of adult Internet users, used interactive technologies to research information on health care in 2000. A study by the Pew Internet & American Life Project found that 47 percent of those seeking help said that the answers they found online influenced decisions they made about treatment for themselves.

Yet, according to the project director, this revolution has gone largely unnoticed. Few studies have been done. Few health professionals understand what their patients do on the Web and the significance of these new patterns for traditional providers.

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RWJF STRATEGY

This grant was a part of RWJF's effort to act as a catalyst in developing a health information environment to support individuals and families. For example, Health e-Technologies: Building the Science of e-Health, the RWJF national program started in 2001, was designed to support and translate results of scientific research on the effects of interactive technologies on chronic disease management and health behavior change.

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THE PROJECT

In 2002, author and researcher Tom Ferguson, M.D., a specialist in health informatics at the University of Texas Health Sciences Center, assembled a group of advisors he dubbed the "e-Patient Scholars Working Group" to help him develop a white paper on e-patients. Over a period of five years, the group of researchers, developers and leaders in the field of online health met nine times and communicated online. (See the Appendix for list of members.)

Ferguson coined the term e-patients to describe individuals who are engaged in their health care decisions and make the most of the resources on the Internet in support of them. He envisioned health care as an equal partnership between e-patients and health professionals and the systems that support both.

Due to illness, Ferguson was unable to complete the full scope of work as originally proposed. Following his death in 2006, the e-Patient Scholars Working Group completed his project with the production of the white paper "e-patients: how they can help us heal health care."

The group also launched www.e-patients.net to continue the discussion of how e-patients are affecting the health care system.

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RESULTS

The white paper "e-patients: how they can help us heal health care" describes how first-generation e-patients are transforming the American health care system:

  • The Web has revolutionized access to health information, democratizing it and allowing patients to become equal partners in decisions about their own health care.
  • People learn from one another. Online communities and support groups have united people worldwide and allowed them to make informed choices about their health.
  • Patients working together online can collect anecdotal evidence and other information that is difficult to gather but can have a profound influence on the health care system. For example, www.PeoplesPharmacy.org has allowed people to report problems with a generic drug that prompted a Food and Drug Administration investigation.
  • Clinicians have been relatively slow to accept or adopt Internet-based patient-centered tools. Nevertheless, there are pioneers who have developed ways to work with patients online, using e-mail, bulletin boards, list servs, and Web sites.

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GRANT DETAILS & CONTACT INFORMATION

Project

Exploring Online Health Care in the Information Age: White Papers and Workshops

Grantee

Commonweal (Bolinas,  CA)

  • Amount: $ 96,356
    Dates: January 2002 to February 2007
    ID#:  043806

Contact

Susannah Fox
(202) 419-4511
sfox@pewinternet.org
Michael Lerner, Ph.D.
(415) 868-0970
Mlerner108@gmail.com

Web Site

http://www.e-patients.net

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APPENDICES


Appendix 1

e-Patient Scholars Working Group

Susannah Fox
Associate Director, Editorial
Pew Internet & American Life Project
Washington, D.C.

Gilles Frydman
Founder and President
Association of Cancer Online Resources
New York, N.Y.

Joe Graedon, M.S., pharmacologist, and Teresa Graedon, Ph.D., medical anthropologist
Authors, syndicated consumer health newspaper column
Hosts of a public radio show, "The People's Pharmacy"

Alan Greene, M.D., pediatrician, and Cheryl Greene, Web site producer
Founders
www.drgreene.com

John Grohol, Psy.D.
Founder
www.PsychCentral.com and Mental Health Net

Dan Hoch, M.D.
Neurologist
Massachusetts General Hospital
Boston, Mass.

John Lester
Founder
www.braintalk.org

Daniel Z. Sands, M.D., M.P.H.
Senior Medical Informatics Director
Cisco Internet Business Solutions Group
Assistant Clinical Professor of Medicine
Harvard Medical School
Boston, Mass.

Charles Smith, M.D.
Medical Director
University of Arkansas for the Medical Sciences
Little Rock, Ark.

Connie Smith
Cancer patient
University of Arkansas for the Medical Sciences
Little Rock, Ark.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Reports

e-patients: how they can help us heal healthcare. San Francisco: e-Patients Scholars Working Group, 2007. Available online.

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Report prepared by: Barbara Matacera Barr
Reviewed by: Pamela Lister
Reviewed by: Marian Bass
Program Officer: Robin E. Mockenhaupt

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