Wednesday, June 19, 2013

Relieving Pain in Kansas City by Celeste Cooper

"Discontent is the first necessity of progress."
~Thomas A. Edison

On June 13th the first meeting of the patient focus group “Relieving Pain in Kansas City” was held.

Says poet William Cowper, “Variety is the Spice of Life,” and boy is he right.  This eclectic group from the greater KC metro includes local pain group leaders, and patients suffering with a variety of chronic pain conditions all came together for a collaborate effort.  To sweeten this eclectic pot, also present were concerned care givers, clinic representatives, a social worker, physician and nurse practitioner, a wealth of experience within the patient group, and other people interested in "transforming the way pain is perceived, judged and treated " fulfilling the mission of the Institute of Medicine report:

“Relieving  Pain in America: A Blueprint for Changing Pain Education, Care and Research." 
See the Institute of Medicine (IOM) report brief here.

The IOM report states that pain patients, some 100 million Americans, have the right to moral and ethical treatment of their pain, and they have the right to treatments focused on improving patient outcomes, and treatments that fit within the individual’s framework of what works best for them.  Of particular importance to me, one of the reports states women, the poor, and African-Americans are discriminated against when it comes to having their pain treated, they are stereotyped.  This is no surprise; I have seen it happen in my own family.

That is one of many tough issues we face. Each of us has our own ideas based on our individual experiences, and for the first time, we will be able to use our voice to focus on research that will answer questions posed by pain patients collectively. It will be our voice that decides what research is done.

The Affordable Care Act makes provisions for the Patient Centered Outcomes Research Institute (PCORI) in an effort to promote a new approach to research -- one that is patient directed.  If enough patients stand up, or sit up in some cases, and say YES, we could secure funding for a "Patient Powered Research Network (PPRN)."   At the June 11th meeting more than 30 people said unequivocally, “We want you to hear our voice.” 

We, as patients and other interested parties regarding the moral treatment of pain, are clamoring for this tremendous opportunity.

First, we had to have a meeting of interested people, check. Second, we have to apply for a grant, which is being prepared by Dr.  Kim Kimmineau, at the American Academy of Family Physicians, check. Three, we continue to meet and begin discussion on important concerns while we make our way through the first phase, check.

We may not be able to physically march, but if we are selected, we will march against pain as part of an unprecedented approach to “Relieving Pain in KC .” The group is salivating at the opportunity to be part of this monumental endeavor.

The next meeting will be Thursday July 11, 2013. The time and place will be announced later.   

At that meeting, Dr. Richard Payne, who is part of the steering committee for the Center of Bioethics initiative, the Pain Action Alliance to Implement a National Strategy (PAINS) that I also participate in, will be speaking.  Read more about PAINS here.

He, and our leader Myra Christopher, shared an important connection by serving on the IOM committee that published “Relieving Pain in America." Myra also serves on the National Institute of Health (NIH) Interagency Pain Research Coordinating Committee (IPRCC) in Washington DC, which is a committee that reports to the Secretary of Health and Human Services, Kathleen Sebelius.  

Myra misses no opportunity to fight for social justice. It should be a great meeting and one you won’t want to miss, stay tuned.

We don’t always know if we will be heard, but I can say for certain, we will not be heard if we don’t speak. THINK adversity? SEE opportunity.

In healing and hope to all who share this journey.  

Celeste Cooper, RN, author, health expert at, advocate, participant in the Pain Action Alliance to Implement a National Strategy, and chronic pain patient.

1 comment:

Unknown said...

F A N T A S T I C!!!

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