Voting for the scholarship is July 16-August 3, 2012. http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/ I will win if you- DAILY - push the 'Like' button for FaceBook, Twitter, and leave a positive comment. Thank you!
My essay:
Login, “Like” Twitter & Post: When the Medical Device Safety Act is passed by Congress and
the Charter of the FDA is amended to include voting Patient Representatives on
the medical device panel (as in pharmaceuticals), social media will be able to claim
a large part of the victory.
Four years ago I began handling phone, mail and other
correspondence for a family member who experienced early failure of a joint
replacement implant. Internet
research revealed the medical and legal purgatory of thousands of joint
replacement implant patients. Navigating
the medical system (for a disabled person prescribed maximum dose painkiller
and living 1,000 miles apart) is challenging but not uncommon situation for
many caregivers, I learned. Because
the root of the problem was intractable (poor federal public policy) my role transitioned
to unpaid full-time advocate. I applied and was selected in September 2010 to
attend the FDA Patient Representative workshop, which expanded my advocacy to all
patients with failed implanted medical devices.
My stated goal is to help patients with failed devices
access the medical care that they require and to work toward the conclusions of
the Institute of Medicine’s 7/29/2011 report. It advised the FDA to restrict
the use of FDA 510(k) approvals for implanted devices and provide a post-market
UDI national registry that would be accessible to patients and their medical
providers.
This quest prompted me to join with a number of effective advocacy
organizations such as The Society for Preventative Medicine, Consumers Union
and SpeakerLink. I created a blog
(http://fida-advocate.blogspot.com) and regularly
participate on FaceBook, Twitter (@JjrkCh) and
LinkedIn. I have testified twice
at FDA/CDRH Town Hall meetings and have traveled from my home in Dallas, TX to Minnesota,
Washington, DC -4 times-, San Francisco, CA, Irving & San Antonio & Austin,
TX in my role as advocate.
Recently, financial limitations prevented me from attending Regina
Holliday’s The Walking Gallery and the HDI Forum in Washington, D.C. (both with
registration complete) so I participated virtually on a webinar.
In my work toward the goal of safer and more effective
implant devices I would value and benefit from discussions with trained social
media professionals and other advocates.
I wish to elevate my advocacy skills and clarity of purpose so that I
capably represent the patients who
have been harmed and are often unable to travel or spare time/money for this
endeavor. Exposure to new
ideas/attitudes would refresh and enhance my implementation of more targeted
social media communications. My advocacy
includes educating the public, the device industry, administrators and
legislators about federal public policy and legislative changes that would
strengthen patient safety and reduce patient harm.
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