The problem is that, on Capitol Hill and in many federal
agencies
(with the exception of Agency for Healthcare Research and
Quality), there has developed a narrow focus on OA, not on
patient-centered tools for health prevention and care. This
is
despite the fact that the government's own blueprint for
health
promotion, Healthy People 2010, makes improving health
literacy a
primary focus. In the context of Healthy People 2010, health
literacy means reaching unserved and underserved
populations....not making scholarly articles available
through
OA. It means bridging the digital divide, not making it
wider by
focusing on people who already are lucky enough to have
broadband
Internet access and the education to interpret and make use
of
primary biomedical literature.
Also, it is a sad fact that with the NIH budget declining in
real
dollars, health research and education is a zero-sum game.
Fiscal
support for NIH has steadily eroded since 2003 as
appropriations
have flattened or even decreased. In the last four years,
the NIH
budget has not kept pace with biomedical research and
development
inflation and the agency has lost about 10 percent of its
purchasing power when adjusted for biomedical inflation. So,
even
though a patient-centered database or PMC might not cost a
lot in
relation to the total NIH budget, every dollar applied to a
new
program is money taken a shrinking pool of money.
Peter Banks
Banks Publishing
Publications Consulting and Services
pbanks bankspub.com
www.bankspub.com
www.associationpublisher.com/blog/
On 4/7/07 8:12 AM, "Vivian Stieda" <vstiedaucalgary.ca> wrote:
> What does open access have to do with the NIH setting
up a
> patient-centered database of genetic disorders? Both
are worthy
> pursuits, not ones that cancel each other out. The
argument seems
> a little fallacious.
>
> IMHO...
>
> Vivian Stieda, General Manager
> Health Knowledge Network
> Calgary, AB T2N 4N1
> email: vstiedaucalgary.ca
> URL: www.hkn.ca
>
>
> Peter Banks wrote:
>
>> I have nothing but the highest respect for Sharon
Terry, who took
>> extraordinary steps to understand and find
treatment for her
>> children's condition.
>>
>> I realize that her experience has made her
passionate advocate
>> for open access, but I am not sure that's the
conclusion I would
>> draw. Why should parents have to go to heroic,
extraordinary
>> lengths--in effect, training themselves as
molecular
>> biologists--to understand a child's genetic
disorder? Unlike Ms.
>> Terry, many will never be able to read the primary
literature
>> even if it were freely accessible.
>>
>> I would think that rather than proposing to help
patients by
>> promoting OA, the NIH could do far more good by
creating a
>> patient-centered database of genetic disorders,
with the latest
>> information on incidence, etiology, diagnosis, and
>> treatment--and, perhaps more importantly, a list of
any clinical
>> trials and leading investigators for the disease.
Understanding
>> the disease is important, but even more so is
finding a research
>> clinician who can help the family find the latest
treatment
>> protocols.
>>
>> OA seems neither an efficient not an effective way
to help
>> parents in situations like Ms. Terry's. Worse, the
singular focus
>> on it may be hindering discussion of how else the
Internet might
>> be used to help patients and their doctors.
>>
>> Peter Banks
>> Banks Publishing
>> Publications Consulting and Services
>> Fairfax, VA 22030
>> pbanksbankspub.com
>> www.bankspub.com
>> www.associationpublisher.com/blog/
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