Pay attention a minute
 

We know a lot about PD. But how much would we know if we didn't have access to the NIH's Medline database where all the abstracts come from? There are people who would like to see that access eliminated unless you paid the $30 to $150 per paper that they would like to charge.

Current policy is that if research is paid for with tax dollars, that it must be made available to the taxpayer in a year's time. Sounds reasonable to me, but then I'm not a legislator listening to the whispers of those who would put a wall around research. Rep. John Conyers needs to hear from us and so do the 5 sponsors on his bill now in the House that would cripple the current system.

"Recently, government-sponsored agencies like NIH have moved toward open access of scientific findings. That is, the results are published where anyone can see them, and in fact (for the NIH) after 12 months the papers must be publicly accessible. This is, in my opinion (and that of a lot of others, including a pile of Nobel laureates) a good thing. Astronomers, for example, almost always post their papers on Astro-ph, a place where journal-accepted papers can be accessed before they are published.

John Conyers (D-MI) apparently has a problem with this. He is pushing a bill through Congress that will literally ban the open access of these papers, forcing scientists to only publish in journals. This may not sound like a big deal, but journals are very expensive. They can cost a fortune: The Astrophysical Journal costs over $2000/year, and they charge scientists to publish in them! So this bill would force scientists to spend money to publish, and force you to spend money to read them."

From http://atheonews.blogspot.com/2009/0...be-secret.html

Contains the links you need.

will ask PAN staff
 

here is a link to the bill: http://thomas.loc.gov/cgi-bin/query/z?c110:H.R.6845:

and some more info http://newsbreaks.infotoday.com/nbRe...rticleId=50849

I'll ask the powers that be about this at the PAN Forum this coming weekend. It sure doesn't sound like a good thing!

Rick,
NIH, Howard Hughes, MRC, Wellcome Foundation and several other organizations that fund research require that published papers and materials to be freely available to whoever wants them. Considering that there are so many journals these days, no one (person or company or a lab can afford to subscribe to all. Scientific community depends on pub med and free access to journal articles. I am surprised that there is no noise about this from my colleagues and friends. Thanks and I will recruit people to send letters

girija

Thanks for posting this.

Carolyn

it has not escaped my attention
 

that my neuro, my GP and all other medical professionals don't seem to have the time or even possibly the interest in keeping up with their reading homework. I'm not saying they are at fault, just on the run most of the time. WE are the ones who do most of the reading. We are the threat to their comfort zone, and with a little ingenuity (and a good medical dictionary) can mostly understand what's being said.

We are the people who can take the power if we can reach high enough to grab it off the bookshelf. It is not news to anyone on this forum that we have to be our own advocates these days. Sounds like someone has another agenda and just doesn't like it when the peons come to the table with valid and viable information.

I think someone has hit my militancy button again. I guess when they were talking about free speech in america, someone forgot that freedom and free don't always mean the same thing. Sounds like a pretty hefty dollar value on what should be available to all.

Thanks Rick for this thread.

Anyone know the history?
 

Somewhere I read that the NIH, Medline, and open access came about in the mid-90s and was somehow the result of efforts by Al Gore. Does anyone know? That could be a powerful symbol if they are trying to do away with one of the nobler works of their own party.

And it would be interesting to know who will benefit the most. Perhaps the specter of a patient movement to keep this vital info open and free would give both politician and CEOs pause. It is far more than just PWP, of course. Anyone with a life threatening disease will be harmed.

The argument can be made that if they rely on tax dollars for even part of their funding, then there is a debt to society. That goes far beyond a given project. If the researchers got their education at a government funded school and with a student loan guaranteed by the government, that's our money. And as for the poor, poor publishers, are they willing to print only those reports that don't rely on government funds? Including prior research?

How about a line of wheel chairs outside their offices protesting the concept of "Limited Access"? :D

Sample email
 

I just emailed the following to Rep. Conyers. He'll never see it but a staffer might.



Mr. Conyers-

First, let me make it clear that I have come to appreciate you and your efforts to curb the past administration in particular. Please consider this to be an email from a friend.

I am, however, a concerned friend and suspect that you have been misled. A man doesn't build a lengthy record of service such as yours without being aware of the public interest and the political "weight" of a given issue. HR 6845 is an issue with far more such weight than would be apparent at first look and I hope to convince you to reexamine the advice that you have been given thus far. I assume that you have had no shortage of input from the business interests who stand to profit from the proposed changes. And I am certain that there has been some objection from scholars and researchers, albeit disorganized. It is a third group that I wish to make you aware of whose voice is only now being raised. A relatively new creature, it has been best described as the "E-Patient", the patient who uses the Internet to educate himself about what he faces in the management of traumatic or long term illness and, increasingly, to use the skills that come with using the Internet for such a serious purpose in order to advocate for his interests with both doctors and governmental representatives.

I am such a patient, having been diagnosed with Parkinson's Disease (PD) in 2000. PD is a mysterious disease of unknown cause and no cure. Symptoms can be relieved for a time, but only that. Or so it would seem if one is limited to the popular press and what my neurologist learned in school twenty years ago. However, if one takes the time to dig deeper, one can learn much about PD and how to manage it. About how to buy time and what research lines are showing promise.

Parkinson's Disease is just one of dozens of conditions which have a strong E-Patient community. For example, I belong to an electronic forum called "Neurotalk" where E-Patients meet to compare notes, support one another, and just talk. That site has over 15,000 members discussing forty different conditions!! Fifteen thousand people on just one site. And every one of them relies to one degree or another on NIH and its Medline database for information.

I speak for a lot of people when I say that I would be lost without it. And, I must be honest about it, I would be angry as well. Not only for the impact upon my life and being condemned to die in ignorance when I would choose to struggle in the light of the latest knowledge, but also because of the injustice inherent in these publisher's plans. After all, they can solve their problem for the most part simply by refusing any involvement with tax dollar funding. Let them publish their privately funded studies without relying on taxpayer funding of any sort and see how long they last. They are trying for the cake and dessert at the same time and they are hoping to do it at both my expense and yours. We both have far more important fish to fry at this point in time.

I ask that you reexamine this issue and withdraw HR 6845.

Thank you,
Richard H. Everett
Maryville, TN
(Represented by the Hon. John Duncan, Jr. - one of the few Republicans to cultivate a spine over the last eight years)

Conyers
 

Thanks, Rick for bringing this to my attention; I had no idea this bill existed. I wrote to Rep. Conyers @
john.conyers@mail.house.gov

Maybe if he receives lots of emails from our group, he would be persuaded to reconsider.
Just a thought, does anyone know how to structure a petition for signatures which could be sent to him?

thanks again, madelyn

I've looked around the net today, and there are many many against this bill.

I'd send complaints to YOUR voting representative too.
Conyer's is not going to do anything to tank his own works.

and evidently this is not the FIRST time around for this bill:
http://scienceblogs.com/clock/2009/0...bill_again.php