Obtain Open Access to Medical Journal Studies-Act to Contact Senators

[Guest guest]

Message: 23

Date: Fri, 8 Oct 2004 11:31:17 -0700

From: " Coy " <catherinecoy@...>

Subject: Re: How We Learn

" Learning from each other & passing it on is how people change. "

This is so true, but the impediments to learning are everywhere, too. This

is from another " learning together " health and nutrition board.

***

I read a message about advocacy for open access (OA) to the peer-reviewed,

publicly-supported research literature. The message outlines steps that can be

taken now (especially by those located in the USA) to foster OA. Please note

that action needs to be taken before November 16. A copy is attached below.

The message was prepared by Musa Mayer, a patient-advocate who is a long-time

member of (and a respected contributor to) the Breast-Cancer Mailing List

(BCML). It's based mainly on messages that I've posted recently to the BCML; the

most recent posted on October 5, see the archives of the BCML,

at: http://bclist.petebevin.com/list/2004-10/0180.html

Please read the message (and, if you can find the time, do some advocacy

yourself, if you support the NIH's draft plan - see below).

Open access to scientific/medical literature

Years ago, many medical/scientific journals made their current issue

available online for free. Others opened their archives. Now that's rare. Today,

it

can cost up to $30 to purchase full text of a single journal article.

Subscriptions are prohibitively expensive, and

abstracts often don't include essential information needed to evaluate

studies. How can we, as advocates and consumers, keep current with the research?

How

are patients supposed to inform themselves?

Do you believe that when our tax dollars pay for research, it ought to be

publicly accessible when published, without our having to pay a second time? If

so, read on--you are not alone. Open access (OA) is becoming a big issue. The

material that follows was prepared for distribution by a long time friend,

Canadian epidemiologist Jim Till. Thank you, Jim! Now it is up to us...

As a taxpaying U.S. citizen, there's a lot you can do to support the movement

towards open access (OA) to scientific research. See: Alliance for Taxpayer

Access, http://www.taxpayeraccess.org/you.html

A short summary of the NIH proposal about OA is at:

http://tinyurl.com/5do5t

(http://grants.nih.gov/grants/guide/notice-files/NOT-OD-04-064.html)

At the end of the NIH proposal, there's a statement: " We encourage that all

comments be directed to the following NIH website " :

http://grants.nih.gov/grants/guide/public_access/add.htm

There's an excellent article in Open Access Now, " Patient advocate calls for

Open Access " (An interview with advocate Sharon Terry),

http://www.biomedcentral.com/openaccess/features/

Some excerpts: " ...in 1994 my two children were diagnosed with a rare genetic

disease called PXE "

" ...her battle has been constantly hindered by her difficulty in accessing

scientific information as a member of the lay public. 'At the beginning we

really wanted to get more information,' she recalls. 'But when we went to try to

find that information, we discovered that it was very hard to get'. " .

" Terry is angered by the argument voiced by some publishers that the lay

public should not have access to research information because they won't

understand it. 'That's very insulting. It's ironic; because one of the things

that they

often say to us is that it's dangerous for us to have that information

because we won't know how to interpret it.' But Terry feels that often the

information on rare diseases is of low quality or even false " .

See the ATA recommendations for individual actions that could help the OA

cause. Among the most effective options are sending a letter, fax, or email to

your Senators expressing support for the NIH plan. This information is provided

in the October issue of Suber's SPARC Open Access Newsletter,

http://www.earlham.edu/~peters/fos/newsletter/10-02-04.htm

All comments are due on November 16, 2004. See:

http://grants1.nih.gov/grants/guide/notice-files/NOT-OD-04-070.html

More from Suber's SPARC OA Newsletter: " The fate of the House language

will be worked out in a conference committee ... The members of the conference

committee are yet to be named. But at this stage the Senators most worth

reaching with your views are Specter (R-PA), Harkin (D-IA), s (R-AK), Byrd

(D-WV), Frist (R-TN), and Daschle (D-SD). If you have a relationship with any

of these Senators or their offices, or if you reside in one of their states,

then your phone call, fax, or email would be a big help " .

" ... see the ATA recommendations for individual actions that could help the

cause. Among the most effective options are sending a letter, fax, or email to

your Senators expressing support for the NIH plan " . See:

http://www.taxpayeraccess.org/you.html

Via this URL, links are provided to a selection of letters, designed to give

you a start in expressing your personal connection to this issue to your

senators. A link to a lookup service is also provided, to help you identify

their

contact information.

As is pointed out at the http://www.taxpayeraccess.org/ site, access to

scientific and medical publications has lagged behind the wide reach of the

Internet into U.S. homes and institutions. Subscription barriers limit U.S.

taxpayer

access to research that has been paid for with public funds. US advocates can

do something to change this.

Please feel free to forward copies of this message to anyone who might be

interested. Advocacy can make a difference!

commenting again: The reason I know that the Budwig Protocol is

efficacious is that I've read so many of the medical/scientific journals that

are now--but may not be in the future--available to me. I'm dismayed beyond

description that I may not have the opportunity to " connect the dots " and that

any treatment, no matter how obscure or widely unaccepted, may remain obscure

because I didn't have the information with which to make an informed choice.

Because of the very fact that I can read and study, I believe that Dr. Johanna

Budwig did, in fact, stumble on something truly healing and I believe that,

eventually, Cancer, Inc. will be forced to admit that most degenerative diseases

are the result of a nutrient deficiency; in this case, Omega-3 Essential Fatty

Acids.