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Joleen C. – Scholarship Contest
Essay
Editor’s Note: Joleen C. is a patient/caregiver who
submitted the following essay as part of the Mayo Clinic Center for Social
Media Patient, Caregiver
Scholarship Contest. To vote, simply use
the Facebook “Like” or Twitter “Tweet” buttons at the bottom of each post to
share or leave a positive comment. The top vote-getters will be finalists.
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.
I appreciate that Mayo Social Media has many qualified
applicants for these three scholarships. Thank you for your consideration
and this valued opportunity to communicate via social media! – Joleen
Chambers
Select TWEET button. Select 'LIKE' button.
Read to the bottom of all comments and leave your COMMENT and press POST COMMENT.
(I am now ranked at #5 and I must be #3 to be selected. It is very possible with your help and the help of your followers! Thank you so much!)
Please vote daily until August 4, 2012.
http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/
http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/
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