Posted by Cam W. on September 29, 2001, at 13:20:36
In reply to Re: Washington, DC, and Quality of Information, posted by Dr. Bob on September 28, 2001, at 1:28:47
> BTW, I'm supposed to say something there about: (1) how aware patients in online support groups are of the various online ethics and quality initiatives, (2) to what extent those initiatives influence their use of online resources, (3) what other methods they use to decide whom to trust, and (4) the ethics of facilitating such groups.
> Any comments on any of the above? (Remember, these are comments I might present.)
Bob - May I suggest saying something about not assuming that people know too much about the ethic and initiatives of a site? I have only given cursory looks at the online literature regarding ethics and quality initiatives that "should be" contained within online information of any kind. I tend to rely on internal "gut" feelings about sites when I first enter. The true nature and intent of a site usually does reveal itself over the course of a couple weeks (or a couple months, depending upon the my familiarity with the content of said site).
Perhaps the thought with which one gives to the ethics of a online support group depends upon a number of internalized factors, which make up "gut" feeling. Exposure to the nature and imporance of ethics could be one. The more one has been "consciously" exposed to ethics, the more one may "consciously" look for the ethically quality inherent in any support group.
As said above, the familiarity of the content of the support group to the participant, is a large factor in the "ability" of the participant to determine the ethical quality of the group. The determination of ethics, I would think, would be based on an interalized sense of right and wrong, that has be instilled, throughout life, into the participant. Hence, a participant's personal ethics and familiarity with the subject matter would be major factors in their perception of the ethics of the group. This perception would vary widely among participants in the group.
For example, a fundamentalist christian support group for depression, where prayer and meditation are advanced over scientific methods (psychotherapy and pharmacotherapy), would raise different ehtical issues, to different extents, in different people. Some would wholehearted follow the doctrines of this group, others would be able to formally and logically show the pitfalls of such practices, but most people's ethical base of such a site would fall somewhere inbetween.
Actually, we have seen the same sort of thing on this site, where some visitors have said that we dwell too much on pharmacotherapeutic issues, rather than psychotherapeutic issues (ie. CBT, etc.). Evidence of bias toward medical treatments "could" be seen in the division of psychological issues from medical issues, and the insertion of psychological issues onto a board (PSB) where it is blended into stictly social (eg chit-chat) issues, only a part of which concerns "structured" therapeutic psychosocial issues.
Another problem of ethics is in defining the term within the context with which it is used. Again, personal bias comes into play. In the case of this site, the bias of the medical community. I guess that fundamental ethical considerations come into play (ie. "first do no harm"), but these do not have solid edges either. This we have seen in the most recent debate ;^)
The issue of who to trust is another concern close to my heart. I think that, in general, people who use medical support groups can be too trusting. We have seen instances of this during the lastest debate. Big words and eloquent speech can be confused with knowledge and training, as can adequate search skills. People cannot be sure what is fact and what is conjecture. This is true even of the most knowledgeable, at times. Everything that is said, any advice that is given, must be taken with a grain of salt. I am not sure that everyone realizes this. Granted, most people who are online are probably above the national average in intelligence; they wouldn't have a computer, or know how to use it otherwise (did you realize theat 50% of people are of lower than average intelligence?).
I think that consistantly accurate information (as accurate as medical science allows) over time, along with verification of knowledgeable posters on the site (a must), is the only way we are to truly be able to decide who to trust. I do not think that citation is absolutely necessary, unless a point of view can be logically challenged. There are inherent problems in the citation of studies, especially when that study is not easily accessed. Although the ability to find citations to back one's view is a must. Still, as stated above, one must read posts closely and inject healthy skepticism into what they have read, regardless of the poster.
Another problem that I have recently found is that one has to be careful when posting conjecture, even when it is stated (several times) in the post, that it is only conjecture (ie. my post on kindling in MDD - an argument that could be raised is that kindled MDD is really in fact misdiagnosed Bipolar Disorder Type II, or in fact that "perhaps" MDD and BiPD are "possibly" on a continuum). There is a problem that people could use conjecture as fact in subsequent post, misleading readers. I am not sure how this confusion can be avoided; perhaps by posting a disclaimer in large type at the begininng of a post.
I'll muse on some of your other questions over the next couple days. I am not sure that this is what you are looking for.