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Commentary
The original version was peer-reviewed, edited and published in:
Journal of Cancer Integrative Medicine 2004(Winter); 2(1):21-24.
(This version includes some minor corrections).
Cancer-related electronic support groups as navigation-aids:
Overcoming geographic barriers
James E Till, PhD
Joint Centre for Bioethics and Department of Medical Biophysics, University of
Toronto, and Ontario Cancer Institute, University Health Network, 610 University
Avenue, Room 9-416, Toronto, Ontario, M5G 2M9, Canada
Contact information:
Telephone: 416-946-2948
Email: till_at_uhnres.utoronto.ca
ABSTRACT
Cancer-related electronic support groups (ESGs) may be regarded as a
complement to face-to-face groups when the latter are available, and as an
alternative when they are not. Advantages over face-to-face groups include an
absence of barriers imposed by geographic location, opportunities for anonymity
that permit sensitive issues to be discussed, and opportunities to find peers
online. ESGs can be especially valuable as navigation aids for those trying to
find a way through the healthcare system and as a guide to the cancer journey.
Outcome indicators that could be used to evaluate the quality of ESGs as
navigation aids need to be developed and tested. Conceptual models for the
navigator role, such as the Facilitating Navigator Model, are appropriate for
ESGs designed specifically for research purposes. A Shared or Tacit Model may
be more appropriate for unmoderated ESGs. Both conceptual models raise
issues in Internet research ethics that need to be addressed.
Key Words: Electronic support groups, cancer, mailing lists, navigation
aids, Internet research ethics
INTRODUCTION
Electronic support groups
There is increasing interest in evaluating the impact of Internet-based
technologies on cancer outcomes. For example, in a recent review, Eysenbach1
distinguished four areas of Internet use: communication (electronic mail),
community (virtual support groups), content (Web-based health information), and
commerce. Of particular interest are electronic support groups (ESGs) in
general, particularly mailing lists. ESGs may be the Internet application area with
the greatest effect on people with cancer.1