Re: Health Information Needs

[Richard Feinman <RFeinman@downstate.edu>]

This was the important point in my letter to Peter Banks which on
reflection was unnecessarily contentious.  My apologies for the
argumentative example.  I think Tony Mcsean's case is more to the point.  
Even if the ADA site were as described by Peter Banks, patients would
still rely on their expert opinion, not the original literature.  The
issue of whether that expert opinion is in line with published data is
another question which I should not have dragged in.

I think that the major argument for OA, made in this listserv before, is
that researchers need access -- and need to be accessed.  Patients will
benefit from increased communication between scientists but it seems
claiming that patients need it directly is not really up front.  It has
always seemed to me that it was a political tactic and since it can be
effectively answered as below, it doesn't seem like a good tactic.


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Richard D. Feinman
Department of Biochemistry
SUNY Downstate Medical Center
450 Clarkson Avenue
Brooklyn, NY 11203

(718) 270-2252
FAX: (718) 270-3316
______________________________

"Mcsean, Tony (ELS)" <T.Mcsean@elsevier.com>
Sent by: owner-liblicense-l@lists.yale.edu
07/26/05 05:57 PM

Until a year ago I ran a fairly large medical library whose remit was
providing clinical information to working doctors in all medical
disciplines. One of the real downsides in an otherwise pretty satisfying
job was the regular out-of-the-blue phone calls I would receive from
people I'd not heard from for a while.  It was always bad news - that they
or a close relative had been given a very unwelcome diagnosis and would I
please look through my library and give them "everything" about the
condition in question so they could cope with things better and be guided
to make better decisions.

In line with the list discussion what they actually wanted varied hugely
from person to person and seemed to depend on personality more than level
of scientific education.  In my experience, and this is in no way
scientific, very few people wanted to delve more deeply into the research
literature than a selection of review articles around their particular
interest.  What the great majority wanted was to be pointed at reasonably
authoritative web sites specifically created for the questing patient -
most were satisfied with what they found there and most of those who
wanted to go further did so within the context of patient self-help
groupings because it saved them time and preserved them from papers
without a recognisable English word in their title.

Dating from well before my time with the company, Elsevier had
arrangements with patient-oriented organisations which gave them access to
our publications in order to ensure that their published material was
based on the best possible evidence.

What we need to recognise as publishers and librarians is that whatever a
lay person's medical information needs, to satisfy them effectively and in
a reasonable time they are going to need the intervention of an
information professional of some sort to make sense of what's out there
and to sort the science from the pyramidology.  This in turn plugs them
into on-site access (and it is a rare and grim medical librarian who turns
someone away in these circumstances whatever the Library Rules might say)
and to the highly effective ILL network. In my view OA in all its forms is
peripheral to this process and that the real every day supporting work is
done by those who work in patient self-help groups and in specifically
patient-oriented information services such as the UK's Help For Health and
its giant offspring NHS Direct Online.

Tony McSean 
Director of Library Relations 
Elsevier