Posted by shar on July 31, 2000, at 22:26:10
In reply to Re: Dr. Bob- a suggestion, posted by Nance on July 31, 2000, at 19:15:20
Dr. Bob, Andrew, et.al.
I've been considering this issue as well. I searched some grant sites and one problem became apparent immediately. Dr. Bob is in Chicago, and we aren't. So, when it comes to filling out forms, indicating the PI, channeling the money, there would definitely be logistical issues (and political issues, probably). Still doable, but would require more coordination than I originally thought.
Second issue came up when I was thinking about the data collection methodology, and data. We would need to discuss the ramifications of reporting brand names (or maybe this is done all the time). Now, maybe the drug cos. wouldn't be concerned with PB results, but what if it turned out that one particular drug (or two) were particularly bad according to PBers. We would need to consider the pros and cons about publishing that.
Third, of course is the privacy issue, and the issue of legal requirements to intervene. For example, if we do a survey and ask about suicide (or homicide), and get national/international responses, there could be a moral/ethical/legal precedent for reporting cases. (I ran into this when I did a study of battered women, and it turned out that if I asked if they had been hurt since their stay in a shelter I would be required to turn in the batterer or the woman.)
The promise of anonymity does not always guarantee it. And, if there is a law or ethical issue, there might be a requirement to track down the person anyway.
I think the gist of the questions in Andrew's survey are on target, but I would recommend a somewhat different format. And, I would just make the survey a PB item, and use a volunteer sample. I believe it is not that uncommon to do so. We already know PBers probably do not represent people in general, and may not represent the depressed population in general.
There was quite a reaction to even implementing the registration we have now. I don't know about requiring it of non-posters, nor about asking questions of the registrants. More to think about.
I was even thinking that with all the archived information, a survey would probably not be necessary. There is much there that would tell if a person changed meds, took other actions, what they wrote about, etc. A content analysis of the archives to present date would be very informative plus maybe a small survey if necessary to follow up.
The archives are so great because I think they contain the "true" issues of importance to PBers. Thus, help to limit random error and spurious fluctuations compared to data collected in a survey.
Those are some preliminary thoughts. I guess we need to decide how serious an endeavor this is/or should be. Plus, Dr. Bob has said he had already considered some outcome measures, I think. If so, it would be great to know what they were.
Shar
poster:shar
thread:41031
URL: http://www.dr-bob.org/babble/20000729/msgs/41900.html