1997 Partnerships for Networked Consumer Health Information Conference
Session Summary: Post-Conference Workshop A
Thursday, April 17
9:00-4:00 PM
sponsored by
U.S. Department of Health and Human Services
Annenberg School for Communication
Workshop
Coordinator
Tom Ferguson, M.D., Author, Health Online,
and Senior Associate, Center for Clinical Computing,
Boston
Online Self-Helper
Group Leaders
Edward J. Madara, Self-Help Sysop, Compuserv
Samantha Scolamiero, Founder, Brain Tumor Mailing List
Elin Silveous, Host, Better Health & Medical Forum,
AOL
Laurel Simmons, Founder, Bone Marrow Transplant Mailing
List
Todd Woodward, Depression Self-Help Group Leader, AOL
Professional
Allies of Online Self-Helper Group Leaders
Linda Adler, Online Self-Help Group Coordinator,
Kaiser-Permanente of Northern California
Allen Douma, M.D., CEO and Medical Director, Health
ResponsAbility Systems, AOL
John Grohol, Ph.D., Webmaster, Online Self-Help
Directories
Arlette Lefebvre, M.D., Founder, Ability Online Bulletin
Board
John Renner, M.D., President, Consumer Health Information
Research Institute
Workshop Agenda
8:30 - 9:00 Check-in and coffee
9:00 - 9:30 Greetings - Mary Jo Deering, HHS Office of Disease Prevention and Health Promotion
From Patient to Prosumer, from Clinician to Coach: Changing Technologies and Changing Roles in Information Age Health Care- Tom Ferguson
9:30 - 10:45 Online Self-Help Leaders: What We Do and Why We Do It - Ed Madara, Moderator. Samantha Scolamiero, Elin Silveous, Laurel Simmons, Todd Woodward
10:45 - 11:00 Break
11:00 - 12:15 How Health Professionals Can Support Online Self-Help Groups - Linda Adler, Moderator. Allen Douma, John Grohol, Arlette Lefebvre, Ed Madara
12:15 -12:30 Break into Interest Groups
12:30 - 2:00 Lunch with Interest Groups
2:00 - 3:30 Break-Out Group #1: The Tradecraft, Recruitment, and Support of Successful Online Support Group Leaders - Todd Woodward, Moderator. Linda Adler, Arlette Lefebvre, Ed Madara, Elin Silveous
Break-Out Group #2: Issues of Quality, Respect, Authority, and Ownership in Online Self-Help Networks - Laurel Simmons, Moderator. Allen Douma, John Grohol, John Renner, Samantha Scolamiero
3:30 - 4:00 Wrap Up and Conclusion - Tom Ferguson
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