Joint replacements are the #1 expenditure of Medicare. The process of approving these medical devices is flawed according to the Institute of Medicine. It is time for patients' voices to be heard as stakeholders and for public support for increased medical device industry accountability and heightened protections for patients. Post-market registry. Product warranty. Patient/consumer stakeholder equity. Rescind industry pre-emptions/entitlements. All clinical trials must report all data.
Please share what you have learned!
Twitter: @JjrkCh

Tuesday, July 10, 2012

Mayo Social Media Summit


Voting for the scholarship is July 16-August 3, 2012.  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 ( 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! 

No comments:

Post a Comment