Re: Health Information Needs

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

" I especially think that the primary justification for NIH support of
open access is the public's right to know."

You may note that this argument is one that NIH itself has largely
abandoned. The PMC repository is defended on the basis of creating a
stable archive, but not mainly as a public health initiative.

This is for good reason. Yes, there certainly are people who can read and
interpret the primary biomedical literature. Particularly in the case of
rare genetic disorders, patients can use the literature to identify
leading research clinicians and promising experimental lines of therapy.

But such patients are the minority. You should not assume that the people
who walk into university medical libraries are representative of the
general population. How many Black and Hispanic people do you serve? There
are about 35 million each in the US. How many poor people do you see? 36
million Americans live in poverty. How many uninsured people, who have
little use for the information they find because they have no access to
health care? 45 million are uninsured. And how many people with limited
medical literacy, who have difficulty understanding even a prescription
label, ever enter medical libraries? 90 million Americans have limited
medical literacy.

I've been accused of being patronizing for suggesting that some patients
cannot make use of biomedical literature. I hardly think that it is
patronizing to provide information tailored to an individual's educational
level, cultural heritage, and medical meeds, as we in fact do--whether
that means providing the journal Diabetes Care or a low-literacy
explanation of the basics of a diabetes meal plan.

I am not arguing against providing original research for the Sharon Terrys
of the world. I am arguing against pretending the OA does much for the
majority of people seeking answers to important health concerns.


Peter Banks
Publisher
American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
703/299-2033
FAX 703/683-2890
Email: pbanks@diabetes.org

>>> mulliner@ohio.edu 07/28/05 6:11 PM >>>

I find that myself in disagreement with Richard Feinman and Tony McSean as
to the necessity of mediation.  As a librarian, I thought of the
profession as gate openers, not gate keepers--especially with the
expansion of electronic resources, and a reason why I championed the "big
deal."  While many may need or prefer mediation is not disputed, rather
why does everyone need to be mediated?  I earlier referred to substantial
efforts to lead prostate cancer patients to original research (especially
as the fundamental treament protocol relies on an informed decision by the
patient--and health care providers in this area strongly tend to recommend
their particular modalities--a bias that access to actual research affords
an alternative).

To me, mediation is like sitting on the beach and introducing people to
the ocean by offering them a tablespoon of sea water.  In opposition to
Fineman, I especially think that the primary justification for NIH support
of open access is the public's right to know.  We paid for the research
and have a right to know what was found.  Other than from an intellectual
perspective, I see no comparable basis for insisting that research results
be shared only with other researchers.

Kent Mulliner        Phone: 740-742-2650
Rutland, OH 45775-9675
mulliner@ohio.edu