1997 Partnerships for Networked Consumer Health Information Conference

Summaries of Plenary Sessions and Breakout Sessions

Customizing Information #5: Long Term Care and Disabilities

Wednesday, April 16, 1997
2:00 - 3:30 PM

Moderator: Arlette Lefebvre, MD, Founder and Past President, Ability Online Network

Speaker: T. Bradly Tanner, MD, President, Clinical Tools, Inc., "A Discussion of Internet and CD- ROM Products for Depression, Schizophrenia and Senior Care"

Speaker: Anthony Margherita, MD, Associate Professor of Neurology, and Orthopedic Surgery, and Director, The Rehabilitation Learning Center, Washington University School of Medicine, "Developing Client-Centered Multimedia for Spinal Cord Injury: The Rehabilitation Learning Center"

Speaker: Linda Roman, CEO, Help Innovations, "A Model for Nurse Case Managed Home Care Using Televideo"

Speaker: Tom Koch, Research Associate in Bioethics, Hospital for Sick Children, "Barriers Have Been Broken; Barriers Still Remain"

Statement of the Subject

This panel’s general focus is the use of new resources to deliver data, support, supervision, and assistance to both those living with limiting disabilities—physical and mental—and their family members. The speakers’ diverse client bases—mental health, spinal chord injury, elder care, child development, chronic illness—are balanced by a common focus in their work. All are developing or have developed online and Web site resources to assist persons with physical or emotional difficulties. The nature of that work—both the uniqueness of the delivery systems and the shared assumptions which define their intent—will be the central focus in this session.

Roles, Responsibilities, and Priorities

The moderator, Arlette Lefebvre, will open the session with an overview of "information age medicine" and the degree to which new electronic resources can and are transforming client relations and client care. A staff psychiatrist at the Hospital for Sick Children, Toronto, she is the founder of Ability Online, an online service developed to assist children with a variety of disabilities and conditions. Another psychiatrist, T. Bradley Tanner, is developing software to work with and educate patients and their families with schizophrenia and depression. In a related project, he’s developing programs related to elder care.

Tony Margherita will expand the frame to describe resources he and colleagues have developed to assist and inform patients with spinal injuries. His is a two-tiered approach, providing Web—based data for patients while developing more extensive systems to be sold to hospital for use on site.

Linda Roman’s Help Innovations, on the other hand, has created a unique program using interactive links to permit home visits by distanced caregivers to fragile seniors. Now in beta testing, her model integrates two-way visual and electronic resources.

Finally, Tom Koch will summarize the panel’s commonality and close with highlights of his five—year research project analyzing online health conference dialogs. A gerontologist and researcher in bioethics, his book, "The Message Is the Medium" uses that material to understand online resources from the point of view of the user.

Next Steps

All these speakers—individually and as a group—will be describing what are essentially works in progress. Web sites are available for previewing, and projects for different groups are in development. They’ll seek from conference participants their observations, insights, and suggestions for further research, further development, and futures.

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