Re: The Value of OA

[Peter Banks <pbanks@bankspub.com>]

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" <vstieda@ucalgary.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:    vstieda@ucalgary.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
>> pbanks@bankspub.com
>> www.bankspub.com
>> www.associationpublisher.com/blog/