Re: The Value of OA

[Vivian Stieda <vstieda@ucalgary.ca>]

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
phone:  403-220-8250 / fax: 403-282-7992
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/