Re: OA benefits associations & is easy too

[Kent Mulliner <mulliner@ohio.edu>]

Having read this ongoing exchange with some interest, I find may
experience 180 degrees contrary to that expressed by Peter Banks.  I've
been monitoring a whole series of listserves operated by US TOO (for
prostate cancer) and by Dan Cooley (www.prostate-help.org) in which
monitoring and critiquing original and clinical research are pervasive
themes (including guidance in effective use of PubMed). The sad part, with
this continuing attention, is that much of the discussion is limited to
abstracts (since the actual research articles are unavailable to the
groups).  Of course, as a result of contributing to the ALPSP study of OA
journals, I was able to point that at least one of the important titles,
the International Brazilian Journal of Urology),was openly accessible.

Contrary to Peter's assertion about patient needs and wants, at least for
the sizeable prostate cancer community (and friends and families), access
to current, authoritative information would rank near the top of
psychological needs if not clinical. I am repeatedly astounded at the
insatiable demand for new research findings and at the lamentable
ignorance of most newbies ot the diagnosis of how to go about finding
authoritative information.  OA is the answer at least for the first of
these.

K. Mulliner
Rutland, Ohio 45775
mulliner@ohio.edu

Quoting Peter Banks <pbanks@diabetes.org>:

> I certainly don't need to respond for AACR, except to say that, as a
> former cancer patient, I am thankful they are not following your advice.
> 
> You make the astounding and unsubstantiated assumption that the single
> most important thing that AACR could do is to provide research findings
> on an open access basis. In your view, this is such a high priority that
> it is worth potentially weakening peer review and reducing any net
> income that AACR uses to support research, advocacy and education.
> 
> So, rather than advocating on behalf of cancer patients or supporting
> research, AACR should throw caution to the wind so that patients can
> read articles such as "8-Oxoguanine Formation Induced by Chronic UVB
> Exposure Makes Ogg1 Knockout Mice Susceptible to Skin Carcinogenesis,"
> in the current issue of Cancer Research?
> 
> Of far greater interest and importance to me are services such as ACCR's
> support and advocacy for cancer patients
> ("http://www.aacr.org/page3882.aspx";)
> 
> Here's my rant for the day (as if this wasn't one already): I am tired
> of OA advocates and the reporters who follow them claiming that patients
> are clamoring for access to original biomedical research. Some--such as
> the families Sharon Terry represent--clearly are, and rightly so. But
> many more, such as those represented by the country's larger voluntary
> health assocaitions, are looking for a range of services: advocacy,
> patient-oriented educational materials, research for a cure, networking,
> and simple support.
> 
> ADA represents almost half a million people. I have yet to hear some a
> single patient that what they truly want is to read the journal
> Diabetes. (A low-fat, sugar-free cookie recipe, now that would be news!)
> 
> It is not helpful to lecture voluntary health associations about what
> they should do, particularly with so little awareness of what the
> patients they serve truly need or want.
> 
> Peter Banks Publisher American Diabetes Association 1701 North
> Beauregard Street Alexandria, VA 22311 703/299-2033 FAX 703/683-2890
> Email: pbanks@diabetes.org