Re: The Value of OA

[Peter Banks <pbanks@bankspub.com>]

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/


On 4/3/07 5:45 PM, "Charles W. Bailey, Jr."
<cwbailey@digital-scholarship.com> wrote:

> Regarding laypersons' use of medical information, here is a 
> quote from my paper "Open Access and Libraries."
>
> For example, Sharon Terry recounts her struggle to gain access 
> to medical literature that might help her two children who 
> suffer from pseudoxanthoma elasticum (PXE):
>
> "We spent hours copying articles from bound journals. But fees 
> gate the research libraries of private medical schools. These 
> fees became too costly for us to manage, and we needed to gain 
> access to the material without paying for entry into the 
> library each time. We learned that by volunteering at a 
> hospital associated with a research library, we could enter the 
> library for free. After several months of this, policies 
> changed and we resorted to masking our outdated volunteer badge 
> and following a legitimate student (who would distract the 
> guard) into the library.40"
>
> Although she and her husband had to teach themselves medical 
> terminology to even read needed literature and faced major 
> barriers to accessing it, they went on to establish a nonprofit 
> organization devoted to PXE, and they discovered a key gene 
> related to the disease and created a test to detect it. 
> Admittedly, few people would be able to duplicate this feat; 
> however, one does not need to look far to encounter average 
> citizens who, when faced with a major medical crisis, try to 
> conduct research that will help them overcome it. . . .
>
> 40. Sharon Terry, "In the Public Interest: Open Access," 
> College & Research Libraries News 66, no. 7 (2005): 522, 
> http://www.ala.org/ala/acrl/acrlpubs/crlnews/backissues2005/julyaugust05/publi 
> cinterest.htm.
>
> Best Regards,
>
> Charles W. Bailey, Jr.