In this brief (30-minute) and informative event, Pat Furlong (Founding President and CEO of Parent Project Muscular Dystrophy) joins Heather Joseph (Executive Director of SPARC and administrator of the ATA) to review:
What is public access and why is it important to patient advocates?
What is the Alliance for Taxpayer Access?
Current public access legislative initiatives and their status
How you can help make public access to publicly funded research a reality
Talking points for patient advocates reaching out to legislators
We support the Public Access Policy of the National Institutes of Health because taxpayers have a right to the results of research funded with taxpayer dollars.
Access to health-related information is critical to patients and families who wish to make informed decisions about their care and who wish to ensure scientists and doctors have access to the research they need to advance therapy....
We ask that the results of research funded with taxpayer dollars be made available on the Internet, for free, as soon as possible and no later than 6 months after publication in a journal.
Tips on effective advocacy
Stay current on issue-related developments and in close touch with other advocates.
Use your personal story to convey the importance of access to information in your life.
Establish a relationship with your representatives. Keep them informed on how the issue impacts you on a regular basis – i.e. you were unable to access an article related to an ongoing trial, or just send casual updates on what you’re doing.
Make sure you thank them for each and every step.
Posted by
Peter Suber at 9/21/2007 11:09:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
I recommend the OA tracking project (OATP) as the best way to stay on top of new OA developments. You can read the OATP feed on a blog-like web page or subscribe to it by RSS, email, or Twitter. You can also help build the feed by tagging new developments you encounter.
