information, support, and encouragement. The third was the Shared or Tacit
Model, in which several people provide navigation, either tacitly, or by design.4
This third model is of particular interest in relation to ESGs that rely mainly on
navigation provided by participating peers rather than on navigation provided by
participating health professionals.3 These models will provide the conceptual
framework for the remainder of this commentary. They can also be helpful to
those who are interested in ESGs and their possible impacts on health
outcomes, and can be viewed as a case study in the emerging field of integrative
cancer research.
DISCUSSION
An example of a Facilitating Navigator Model
The ESG used as the intervention in the RCT carried out by Winzelberg et
al.2 was developed for the purposes of their research. It was a semistructured
ESG moderated by a healthcare professional and delivered in an asynchronous
newsgroup format. It is noteworthy that the involvement of a health professional
as the moderator (or facilitator, or navigator), and some aspects of the format
and the eligibility of participants, could be regarded as features of this study that
were imposed by the RCT design.3 In effect, the navigation model used by these
investigators was a Facilitating Navigator Model, in which the major role of the
navigator was to provide information, support and encouragement.
As noted above, Winzelberg et al.2 identified some ESG-related ethical
issues associated with the ESG model they had adopted. One ethical issue was
how to inform participants about the limitations of the moderator's role.
Participants were told, prior to joining the study, that the intervention was a
psychoeducational support group. It was not meant to provide a form of
psychotherapy, nor was it intended to be an alternative to psychotherapy.
Members of this ESG could offer each other advice, but the group moderator
(navigator) refrained from doing so.
A second ethical issue was the privacy of the participants.2 The Web site
used in the intervention was password-protected. Participants could read
personal stories from survivors and share their own experiences. They could
also keep a Web-based personal journal, but the personal journals were closed
to review by other members of the ESG.
In this intervention,2 participants were told not to disclose any information
that they learned about group members to others, and to refrain from allowing
family members or friends access to the Web site. Participants were also warned
that, because no Internet-connected system can be completely secure from
attack by skilled hackers, there are limits to the confidentiality of any Web-based
intervention.
But, as the authors2 pointed out, the best protection for the privacy of
participants in ESGs is that provided by security practices of the participants
themselves. For example, they should avoid providing access to the intervention
Web site to anyone who is not participating in the research. Also, participants in
ESGs should be reminded regularly of the limits of confidentiality of Internet-
based interventions, and they should treat their postings as potentially public
documents.