Re: Access

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

I share Dr. Feinman's frustration that not all the links we have are to
full open access articles. When we set up the patientINFORM site, it was
with the understanding that the American Medical Association was a
participant. We therefore created links to articles in JAMA and Archives
journals. AMA subsquently declined to participate, but we elected to leave
the links to abstracts up.  Notably, the major forprofit publishers
(Elsesvier, Wiley,and many others) have made full text freely available
through patientINFORM, as have leading nonprofits (most notably, Annals of
Internal Medicine, which has been a leader in patient access.)
PatientINFORM links now being added will be mainly to full text articles.

As for the attack on ADA's nutritional standards in no. 4, I disagree that
ADA has withheld information about nutrition research. ADA's Standards of
Care is free access, and anyone can read the evidence-based rationale for
ADA's nutritional recommendation. (see
http://care.diabetesjournals.org/cgi/content/full/28/suppl_1/s4). As I
stated before, the full text of Diabetes Care is available three months
after publication, so patients can also examine for themselves the
contradictory research on nutrition.

For the record, very few diabetes clinicians would advocate extreme
carbohydrate restriction that Dr. Feinman seems to favor, since
carbohydrate containing foods tend to be excellent sources of
micronutrients, fiber, and energy. Based on a patient's individual needs,
however, some clinicians might recommend diets moderate in carbohydrate
and higher in monounsautrated fat. Such a strategy would be fully
consistent with ADA's recommendations--and the rationale for such a
dietary approach can be found on materials accessible through ADA.

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

>>> RFeinman@downstate.edu 08/01/05 5:59 PM >>>

First, let me correct what I think is a misinterpretation of my point made
by Kent Mulliner.

1. I did not say (or believe in any way) that "research results should be
shared only with other researchers."

2. I think research results should be available to all.  I agree with "the
public's right to know."

3. All I meant was that, in practice, my (anecdotal) perception was that
the public was not generally crying out for original research but progress
in science was slowed by poor access.  I may be wrong on this and a recent
post had the far out idea of actually trying to get the data.

4.  On reflection, I think it may not be numbers.  If even a few patients
want original data that probably takes precedence over researchers'
convenience.  So, maybe this should be part of the case for OA after all.  
The alternative is to let Peter Banks decide who needs access to what.

5. I certainly don't believe "everyone needs to be mediated."  Just the
opposite. I agree with David Goodman there is a need for increased
information at all levels.  The ADA site, however, is exemplary only if
you agree with their position on all things.  In nutrition, there is
scientific controversy. You could not tell from the ADA site that there
was another side to the story.  Arora's article in Nutrition & Metabolism,
for example, presents this side of it.  I am not saying Arora is right and
they are wrong but McFarlane, the senior author is a respected
endocrinologist and therefore should be taken seriously.  The ADA,
however, tends to ignore or dismiss any strategy involving severe
carbohydrate restriction.  This makes it hard to train library students to
know what a reliable source is, and with respect to the original point,
gives the impression that if you are a patient, you don't need to go to
original sources.  Even if you did, and wrote to their Q&A site that you
saw a study by Yancy, et al. that showed patients on a very low
carbohydrate diet were able to come off medication, you would be unlikely
to get any support.  This is the only part of ADA that I know, and their
intransigence on nutritional issues, in my view, severely compromises the
good work they do in other areas.

6. For the record, I followed Peter Banks's suggestion to look at their
website.  There are, in fact, several links to original research.  For the
link Peter recommended it is not all open, however.  Only 4 of the first
10 articles are available without charge.  The other 6 would cost $ 142 to
download.  Arora's review, however, is open access and raises important
questions that you can always go back and check on the ADA site.

Richard D. Feinman
Department of Biochemistry
SUNY Downstate Medical Center