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The importance of public access to publicly funded research for patient advocates

Published Aug 30, 2007

Patient Webcast Screen Capture

An ATA Web cast
Recorded August 30, 2007
Length: 32mins
[View now]

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

View the recording for:

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.
  • [Explain how access to information is important to you and your family directly].
  • 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.

View the recording

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