This is the general drift delivered by the major media outlets--over and over again--which, allows ME to share the REAL news in health care with you! MS activists, prepare to take an active roll in the current Comparative Effectiveness Research Program.
The basic idea behind the program is: rather than testing something, either a treatment or an accepted practice in the health care industry, to see if it works, we should start comparing approaches to find what works best. A refreshing change from the norm, this program passed in 2009 after the Federal Coordinating Council on Comparative Effectiveness Research (CER) and the Institute of Medicine (IOM) gave their report to Congress. They outlined ten steps to implementing this program. These recommendations call for public involvement on several levels.
The first five steps are already completed. Step two called for, Public input in the delineation of research questions. The committee prioritized the 1546 nominations, creating a top 100 list, which they divided into quarters. Multiple Sclerosis is addressed in the third quartile. Additionally, several questions focus on aspects of chronic conditions, issues relevant to the MS community, such as acute care, MRI's, medical home and remote patient monitoring, just to name a few. I invite you to view the entire list by clicking here.
The next five steps create many areas for public engagement; most clearly outlined in step six: The CER program should fully involve consumers, patients, and caregivers in key aspects of CER, including strategic planning, priority setting, research-proposal development, peer review, and dissemination. The New England Journal of Medicine (NEJOM) published an excellent article where you can find the full listing of CER steps as well as the NEJOM's recommendations. Most noteable, their recommendations regarding step ten states, "Public investment in health information technology and data infrastructure can facilitate ongoing surveillance. Moreover, with changes in the environment --such as new technology, changes in the health care system, or patients' needs-- the CER program should periodically update its list of high-priority topics."
There are several opportunities for you to be involved in this movement. Start by knowing the facts and keeping up with current events (check this blog, or follow us on twitter for updates!). From there, contact your Senator or Representative to discuss the CER Program and the direction you would like to see it move. Share your knowledge by taking advantage of the local media by writing a letter to the editor, or call your local news or favorite radio station. Also, take advantage of your social networks to share your knowledge and encourage others to get involved!
As always, we are eager to answer any questions you may have and would love to hear your comments on this issue as well as how you plan to act. Feel free to leave a comment, or call your local chapter.
