RRP ISA Survey Results

    (Important Disclaimer)


    Newsletter 3/4/08

    To the RRP Community:

    For those who want to quickly cut to the bottom line, please scroll down to the bold type below.

    The good news is that RRP ISA's website (www.rrpwebsite.org) continues to receive a huge amount of traffic and on a near-daily basis, one or several individuals write or call in asking for information or advice. Of course, we do not give medical advice, but we can look at our database for physician referrals, and we can discuss material already posted to the website. People really like the website, that's very clear.

    The bad news is that our message board (accessed through the portal at http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/276/) has been up and running for about a month and a half. While nearly one person a day has joined it, few people are participating. The number of messages posted there is SMALL.

    People generally haven't reported that the message board is difficult to use. Everyone's been able to register--including physicians--and if they remember the user name they gave themselves and save the password that the system emailed to them, we have found that they can post. We even have directions on how to post at http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=25.

    What we are seeing, however, is that people generally are not using the message board. We need to take note of that and, in light of previous message board activity, ask what it means.

    The listserv is doing a good job of being a listserv, but it is not explicitly threaded by questions or topics. We do not mean that as a criticism. It has its strength but it also has its limitations. On the listserv, people don't see a string of discussion dating back for months, say, on cidofovir, HPV or on cancer conversion. A topic pops up on the listserv, it's played with, it's gone. It's a totally "digital" approach to information technology and, as we have always said, it has its place. It is clear that people like the listserv, however, and that may be enough.

    RRP ISA has endured some major expenses to get the message board to the state it is now, but we won't get ego-involved in arguing the need to continue to offer it as an option. There's no point in that and, moreover, it looks to strangers that there's no one in the RRP community. That latter perception is, we believe, very, very dangerous. It greatly diminishes the community in the public eye.

    We're gratified that people used our message boards in the past but if the community is not interested in using this particular one, we will, at the end of the month, consider the option of taking it down permanently. If that happens, I should think there would be no need for a new one and RRP ISA, I suspect, will not be putting forward any effort or expense forward to develop a new one.

    We probably will have an RRP Shout BLOG, but that's a very different thing. What's lost is the ability to easily search the evolution of a topic by title. What's lost too is the back-and-forth that the community can provide, assuming the community is even involved.

    If it is not involved, there clearly is nothing that is lost. We believe removing the message  board will be a loss to the community, but maybe not. We wish to be responsive to community need. We're getting high marks from the community in terms of its feedback on the website. We're getting a resounding THUD with the message board in terms of the number of postings. Even members of the message board have not been posting. At some point, therefore--and I believe it needs to be sooner rather than later--we need to accept the community's "feedback" on the message board.

    Good feedback is reflected in its level of participation. If there is little to no participation, it would appear time to delete the message board. It's that simple.

    If you have "issues" or statements you wish to register regarding this announcement, please do not send me emails, etc. Post them on the message board. We are putting this out there on a "do or die" basis and we are making this a very public issue. This is not a manipulative appeal to get you to use the message board, however, if it's not what you want or need. If it doesn't work for you, by all means do not use it. We're simply saying that we're resolved to take the level of people's involvement at face-value. If the message board gets used, we keep it up past March. If it doesn't get used, then it becomes superfluous and it's probably time to take it down.

    On another matter, you may wish to take note of the fact that the artemisinin institutional trial that we have been trying to get underway appears to be coalescing. I have long suspected that the oncology departments at various institutions may be more forward thinking than many of their otolaryngology counterparts. It is through involvement of the oncology departments that things are beginning to happen. More on this as it unfolds.

    Be well, and we shall close with a prayer that spring comes early this year.

    Warm regards,

    Michael Green, MSW, LICSW
    President and Executive Director
    International RRP ISA Center
    PO Box 4330
    Bellingham, WA. 98227
    Phone: (360)756-8185

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