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Re: How do you decide what to trust? Dr. Bob

Posted by Kaysey on November 1, 2001, at 6:41:36

In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11

> > I'm supposed to say something [in Washington next week] 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.)
> Or, looking at it another way, I'd be curious:
> 1. From the perspective of someone looking for information, how do you decide what information to trust? What leads you to trust a web site? Another group member?
> 2. From the perspective of someone providing information, do you just pass it on, or do you try to present it in a certain way?
> Thanks!
> Bob

1) I would never consider becoming a part of a web site group or any support group without researching information about the health problem that I was experiencing and/or medications that I was taking. With a baseline of knowledge, I seek personal experiences as well as additional information from web sites such as this one. Having some foundation of information allows me to sense what posts are trustworthy and/or valid.
There are a number of very articulate, well-versed individuals on this website who provide a great deal of useful, well-referenced and well-researched reports and data, in addition to realistic experiences. Though I would never replace a doctor-patient relationship with this, it certainly augments my treatment process and I value many of the posts.
2) I try to stress, probably redundantly, that any personal experiences that I share are JUST that: my own personal experiences. In addition to providing my scenarios, I generally give what is expected based on Rx information (i.e. known/expected side-effects, etc.)to compare/contrast with my own reactions.
In this process of 'comparing notes,' I don't think we are actually trying to mimic other people's treatment, I thinking that we are often trying to validate our own experiences which may be in conflict with what our physicians may be expecting. Though this is digressing some, I believe it is important to say that one of the biggest 'draws' of such a website is this validation of our reactions and progress, when the literature, and our physicians insist otherwise.




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