Electronic support groups, cancer, mailing lists, navigation aids, Internet research ethics
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.