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What Do NLM Resources Mean to You?

The Medical Library Association’s Legislative Task Force would like to know how you have benefited from access to federally funded health information resources such as those provided by the National Library of Medicine. We here at NN/LM PNR would like to hear those stories, too!

Per a forwarded e-mail message from Mary Langman, MLA’s Coordinator for Information Issues and Policy:

Your input makes a difference, especially when communicating with members of Congress about the value of libraries and information programs and services. Stories of real life experience are practical ways to help Congress understand how Federal investments in information services and programs, such as PubMed Central, ClinicalTrials.gov, and MedlinePlus, are making a difference in the lives of their constituents.

We are looking for anecdotal information that describes how information accessed from an NLM database or repository has made a difference in someone’s life, in the outcome of their health care, has furthered the discovery of scientific research, or led to the development of innovative programs and services that support our nation’s health information needs.

(The Legislative Task Force) hopes to share this information with members of Congress and their staff during the spring 2011 Legislative Task Force Capitol Hill visits to illustrate how Federal funding and access to health information and services furthers our nation’s healthcare reform goals.

Please send your stories to Mary Langman by February 1, or share them here in the comments.

Thanks to Bob Richart, PNC/MLA’s Legislative Liaison, for forwarding this request.

2 Responses to “What Do NLM Resources Mean to You?”

  1. Mary Beth Simiele Says:

    I know it is past the official deadline for submissions but I just saw this on HLIB and thought I would share. In 2002 my mother was diagnosed with a very rare neurological disease called Progressive Supranuclear Palsy (PSP). PubMed and MedlinePlus became lifelines for my family. We were able to gather reliable information from trusted sources and this allowed us to become informed and active participants in my mother’s care. After she passed away in 2007 I started a support group here in Seattle for PSP patients and their loved ones. Once again NLM resources have proved invaluable in helping my group stay informed on issues surrounding their disease. I use MedlinePlus, PubMed and ClinicalTrials.gov to gather information on topics ranging from medications (there is no effective treatment for PSP), current research, active clinical trials, alternative therapies, and so much more. These resources and the information they provide give PSP patients and their loved ones a sense of control and autonomy and helps them gain an understanding of what is happening to them. They gain the knowledge that they are not alone and that there are doctors and researchers out there that are working to understand and ultimately cure this horrible disease. I can not adequately express how important this is when battling a disease that takes away as much as PSP does.

  2. Alison Aldrich Says:

    Thank you for sharing that, Mary Beth. I’m so sorry for your loss but glad to know that information makes a difference.

    If you’ve reached this page because you are looking for a PSP support group, you can find one here:
    http://www.psp.org/mission/support