Online Discussion Forums Rock! ~ And this study is one I agree with.

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/7/2011 3:24 PM (GMT -6)   
Anyone here who has known me long enough knows that I don't care for how most studies lack important data, longevity, and also are commonly misinterpreted or even misused to represent what the author or reader wants it to represent. However, this study I concur with with open arms and with knowledge as both an online forum moderator and a chapter president of a live support group.

I'll let you read it and come up with your own thoughts, but I already know that almost everyone here will agree with me. Having a place to go to after being diagnosed with cancer to discuss therapy, discuss all options, and for a good old shoulders to cry on, helps us enormously. Here is the article on the InfoLink, and the study.

tinyurl.com/2da39ga

My comments are in response to the article at the bottom, so I will leave it at that.

Tony

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/7/2011 3:27 PM (GMT -6)   
I think it's important to also point out that the study concludes in the following way:

.....
CONCLUSIONS
• Patients readily receive information, advice and emotional support as part of an online support group.

• The scientific evaluation of an online support group is a complementary way of getting to know our patients’ needs and worries.

• Patient–physician contact can benefit from this knowledge.
.....

The last one is a real home run for me. But I believe that more doctors need to attend a support group to understand why that is.

Tony

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/7/2011 3:53 PM (GMT -6)   

I believe that your point about the patient-physician relationship isn’t completely lost on the physicians…I’ve read numerous places in some of the provider-centered publications that they are very aware of the time needed vs. time actually spent with prostate cancer patients, particularly focused on education.  It’s just that there is no easy solution for the providers…but as this study shows, that education can be complimented with online discussion.

Another interesting finding from the article was “A small percentage of the discussion participants (about 5 percent) contribute to the majority (70 percent) of the discussions.”  However, if you drill-down into the raw data behind the statistics in the report, 30% of those most frequent posts are “flames”, and another 30% are feeble attempts to self-rationalize those “flames.”   (JK  :-) )


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/7/2011 4:14 PM (GMT -6)   
Casey,
They probably did not include HealingWell in the study. Your rhetorical paragraph is probably more pronounced here because we truly do try to relax the rules and let the conversation fly more freely. Probably a fault of the moderators and Admin. However, we also have one of the very busiest prostate cancer discussion forums out there. We even top the PPML in daily posts.

I do not fault the doctors alone in my posting, but I can say the the biggest violators of lacking current information seems to be in the doctors office and not quite as much in a patient who frequents a strong online forum like this one. I think my reply says it well in the article.

If there is one thing that I think that can be a huge take home with this study, it's that doctors are not doing a "great" job in the given time they do spend with the patient of providing the latest information available. I see it here and in the live group I run regularly. Continuing education for doctors seems to be subpar when compared to other professions like a real estate agent or tax preparer. And I can spend as much time as I like (or dislike) with those folks.

Tony

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 1/7/2011 5:09 PM (GMT -6)   
I thought it was interesting as well, and posted a snippet of it here yesterday. Your article included more points, and I like the conclusion.

I know that my husband's doctors seemed surprised that we knew as much as we did. We were the first patients the urologist had come across who requested a PCA3 test and a second opinion on the biopsy slides. We read it all here! Too, I calmed down after reading the first responses to my initial post here. At first, all I could think was... CANCER!!! Then I realized it was in all probability not a death sentence.

Juliet
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