This is a press release that popped into my e-mail today from the Genetic Alliance. I thought it too might be of interest to many of you. I'm one of those patients that tries to actually read the latest literature on my disorder. To our doctors, that might seem a bit weird at times - perhaps even a sign of insanity. Lord knows I frequently don't understand everything I'm reading. In fact, I usually arrive at NIH with a list of questions and consider it the highlight of the week when I actually get to ask a few of them to our researchers there.
I try to stay up on the research for several reasons. First, how can I best advocate for our needs if I don't know what's going on? Second, having such a rare disorder, I know my doctors at home don't have the time to comb the Web for the latest research on HPS. Usually these papers don't offer a new treatment, but they do offer me hope. Each one is like a little peice of a puzzle and slowly the peices are coming together. Third, well, to be frank, I just like the challenge of trying to understand these papers. I'm so proud of myself when I "get it."
There is a movement afoot in the patient world (go Genetic Alliance) to make research funded by our tax dollars available to patients (after peer review). I can't tell you how many times I've found a paper I was dying to read, only to not be able to get past the summary without paying $50 or more to get the entire thing. I've found ways to get around this. I nose around in the medical library at KUMed when I can. I ask one of our researchers if they've seen the paper, if they have a copy, and if they'd mind sending it to me - although I rarely do this becuase I really, really hate to pester them for anything. My silly little need to know everything isn't worth their time. It isn't like I'm going to cure this thing - and I'd rather their valuable time be concentrated on finding the cure!
The problem is medical journals stay in busines by charging. It will be interesting to see how they respond to this effort.
But, in the meantime, it only seems fair that if my tax dollars have funded research that I ought to be able to read it.
At any rate, here's the press release.
Alliance for Taxpayer Accesswww.taxpayeraccess.org
For immediate releaseJuly 20, 2007
Contact:Jennifer McLennanjennifer [at] arl [dot] org(202) 296-2296 ext. 121
HOUSE BACKS TAXPAYER-FUNDED RESEARCH ACCESS
Final Appropriations Bill Mandates Free Access to NIH Research Findings
Washington, D.C. - July 20, 2007 - In what advocates hailed as a major advance for scientific communication, the U.S. House of Representatives yesterday approved a measure directing the National Institutes of Health (NIH) to provide free public online access to agency-funded research findings within 12 months of their publication in a peer-reviewed journal.
With broad bipartisan support, the House passed the provision as part of the FY2008 Labor, HHS, and Education Appropriations Bill.
"The House has affirmed the principle that broad sharing of publicly funded research findings on the Internet is an essential component of our nation's investment in science," said Heather Joseph, Executive Director of SPARC (the Scholarly Publishing and Academic Resources Coalition), and a leader of the Alliance for Taxpayer Access (ATA). "This action paves the way for all scientists and citizens to access, use, and benefit from the results of publicly funded biomedical research."
"We're pleased by Congress's recognition of the fundamental rationale for public access - that better-informed patients, clinicians, and researchers will mean better health outcomes," said Sharon Terry, President of the Genetic Alliance and an ATA activist. "The time has come to sweep away unnecessary barriers to understanding and treating disease. The Genetic Alliance thanks and congratulates the House of Representatives for taking this vital step."
The current NIH Public Access Policy, implemented in 2005 as a voluntary measure, has resulted in the deposit of less than 5% of eligible research by individual investigators.
In a recent letter to Congress, 26 Nobel Laureates called for enactment of mandatory NIH public access, noting that, "requiring compliance is not a punitive measure, but rather a simple step to ensure that everyone, including scientists themselves, will reap the benefits that public access can provide. We have seen this amply demonstrated in other innovative efforts within the NIH - most notably with the database that contains the outcome of the Human Genome Project.
""The coalition of support for the NIH policy is extremely broad," added Joseph. "This critical step was achieved as a result of the vision and collective effort of patient groups, scientists, researchers, publishers, students, and consumers who registered their support."
A similar measure has been approved by the Senate Appropriations Committee and will be considered by the full Senate later this summer.
###
The Alliance for Taxpayer Access is a coalition of patient, academic, research, and publishing organizations that supports open public access to the results of federally funded research. The Alliance was formed in 2004 to urge that peer-reviewed articles stemming from taxpayer-funded research become fully accessible and available online at no extra cost to the American public. Details on the ATA may be found at http://www.taxpayeraccess.org.
I try to stay up on the research for several reasons. First, how can I best advocate for our needs if I don't know what's going on? Second, having such a rare disorder, I know my doctors at home don't have the time to comb the Web for the latest research on HPS. Usually these papers don't offer a new treatment, but they do offer me hope. Each one is like a little peice of a puzzle and slowly the peices are coming together. Third, well, to be frank, I just like the challenge of trying to understand these papers. I'm so proud of myself when I "get it."
There is a movement afoot in the patient world (go Genetic Alliance) to make research funded by our tax dollars available to patients (after peer review). I can't tell you how many times I've found a paper I was dying to read, only to not be able to get past the summary without paying $50 or more to get the entire thing. I've found ways to get around this. I nose around in the medical library at KUMed when I can. I ask one of our researchers if they've seen the paper, if they have a copy, and if they'd mind sending it to me - although I rarely do this becuase I really, really hate to pester them for anything. My silly little need to know everything isn't worth their time. It isn't like I'm going to cure this thing - and I'd rather their valuable time be concentrated on finding the cure!
The problem is medical journals stay in busines by charging. It will be interesting to see how they respond to this effort.
But, in the meantime, it only seems fair that if my tax dollars have funded research that I ought to be able to read it.
At any rate, here's the press release.
Alliance for Taxpayer Accesswww.taxpayeraccess.org
For immediate releaseJuly 20, 2007
Contact:Jennifer McLennanjennifer [at] arl [dot] org(202) 296-2296 ext. 121
HOUSE BACKS TAXPAYER-FUNDED RESEARCH ACCESS
Final Appropriations Bill Mandates Free Access to NIH Research Findings
Washington, D.C. - July 20, 2007 - In what advocates hailed as a major advance for scientific communication, the U.S. House of Representatives yesterday approved a measure directing the National Institutes of Health (NIH) to provide free public online access to agency-funded research findings within 12 months of their publication in a peer-reviewed journal.
With broad bipartisan support, the House passed the provision as part of the FY2008 Labor, HHS, and Education Appropriations Bill.
"The House has affirmed the principle that broad sharing of publicly funded research findings on the Internet is an essential component of our nation's investment in science," said Heather Joseph, Executive Director of SPARC (the Scholarly Publishing and Academic Resources Coalition), and a leader of the Alliance for Taxpayer Access (ATA). "This action paves the way for all scientists and citizens to access, use, and benefit from the results of publicly funded biomedical research."
"We're pleased by Congress's recognition of the fundamental rationale for public access - that better-informed patients, clinicians, and researchers will mean better health outcomes," said Sharon Terry, President of the Genetic Alliance and an ATA activist. "The time has come to sweep away unnecessary barriers to understanding and treating disease. The Genetic Alliance thanks and congratulates the House of Representatives for taking this vital step."
The current NIH Public Access Policy, implemented in 2005 as a voluntary measure, has resulted in the deposit of less than 5% of eligible research by individual investigators.
In a recent letter to Congress, 26 Nobel Laureates called for enactment of mandatory NIH public access, noting that, "requiring compliance is not a punitive measure, but rather a simple step to ensure that everyone, including scientists themselves, will reap the benefits that public access can provide. We have seen this amply demonstrated in other innovative efforts within the NIH - most notably with the database that contains the outcome of the Human Genome Project.
""The coalition of support for the NIH policy is extremely broad," added Joseph. "This critical step was achieved as a result of the vision and collective effort of patient groups, scientists, researchers, publishers, students, and consumers who registered their support."
A similar measure has been approved by the Senate Appropriations Committee and will be considered by the full Senate later this summer.
###
The Alliance for Taxpayer Access is a coalition of patient, academic, research, and publishing organizations that supports open public access to the results of federally funded research. The Alliance was formed in 2004 to urge that peer-reviewed articles stemming from taxpayer-funded research become fully accessible and available online at no extra cost to the American public. Details on the ATA may be found at http://www.taxpayeraccess.org.
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