Re: OA benefits associations & is easy too

["Peter Banks" <pbanks@diabetes.org>]

I do not think the fact that some patients have robust discussions about
the literature on list serves qualifies as evidence that "the sizeable
prostate cancer community" engages in such discussions. We simply have no
idea what percentage of prostate cancer patients list serve discussions
represent (we don't know the numerator or the denominator).

More importantly, we have too little data on whether such use leads
patients to better treatment options, better psychological adaptation, or
better ability to navigate the health care system. The best source on this
topic is probably the work of Sue Ziebland and colleagues at the
University of Oxford, who has written extensively on the effects of the
Internet on patients' lives. See, for example

How the internet affects patients' experience of cancer: a qualitative
study BMJ 2004;328:564 (6 March), doi:10.1136/bmj.328.7439.564

Ziebland finds many positive effects from Internet use. However, it is
unfortunately unclear in her research what sites or types of sites
patients found most useful. In one study of prostate cancer patients, it
seemed that practical information and information about the experience of
other cancer patients was most useful.

This is not to say that Open Access isn't of benefit to some patients. But
we in health associations don't yet have the data to know how best to use
our finite resources to best use the Web to help patients. It is far from
a given that providing Open Access to original research is the best way to
help patients, if it means cutting back on other types of education and
support.

Peter Banks
Publisher
American Diabetes Association
Email: pbanks@diabetes.org

>>> mulliner@ohio.edu 07/22/05 4:38 PM >>>

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