Friday, June 5, 2015

A Patient Powered Network: Change Agents for Relieving Pain in America by Celeste Cooper

A Patient Powered Network

Relieving pain in Kansas City (RPnKC) is a patient-powered leadership group with the goal of securing and promoting clinical data research network (PPRN) based on a collaborative, community-driven, community-based participatory research model. We are a group that believes patients have a role to teach others on important key issues based on improving our outcome as people living with chronic pain.

You can be a leader too - read on!

As participants in this patient powered research network, RPnKC patient leaders are united in an effort to change the way pain is “perceived, judged, and treated” as outlined in the Institute of Medicine Report “Relieving Pain in America: A Blueprint for Transforming Prevention,Care, Education, andResearch.”  We feel privileged for the opportunity to use OUR VOICE to influence research on therapies, coordinated care, alternative and integrative medicine, access to care, quality care without bias, research regarding many factors that influence chronic pain, and much more. The Center for Practical Bioethics through their PAINS Project   hold  us to the highest esteem, both in their hands and in their hearts.

Patient Outcome Based Research - By for and with Patients

We are an eclectic group with a variety of chronic pain conditions and backgrounds who have come together for this collaborate effort. We want to be part of the transformation. We want to work collectively with anyone who is willing to promote us in an effort to seek patient outcome based research that will solve the epidemic of untreated or undertreated pain, and we are achieving that goal. We understand, and we want our providers to understand that we are more than our pain, and that pain affects us physically, emotionally, socially, financially, and spiritually. We think it is important that our voices be heard.   Each of us has our own ideas based on our individual experiences, and for the first time, patients will influence research that answers questions posed by us. 

The Right to Ethical Treatment

We believe that we have the right to moral and ethical treatment of our pain, that we have the right not to be judged because we are in pain, and that we have the right to treatments focused on improving our outcome that fit within individual conceptual framework, support safety nets, and to speak up for those less fortunate. In an effort to promote our beliefs, we advocate for research, not only for ourselves as patients in pain, but for over 100 million Americans.

We believe we can set an example that will resonate across America, and we can do that best by participation in this important movement. We can do this despite the obstacles we face every day because we live with chronic pain. Never before have we had the opportunities provided by the vast experience and abilities offered by the many organizations and health centered research organizations, healthcare institutions, and others who are coming together to support the Center for Practical Bioethics in this endeavor.

Find Power in Your Voice

It is our greatest desire that you too will have such an opportunity in your area. I encourage you to share information with your legislators, your local medical groups, local media, and reach out by joining the PAINS Project and encouraging others to do the same. You too deserve to feel empowered as part of this national movement. If you have questions on how to do that contact MaryBennett, Alliance Development Director. 

Sincerely, Celeste Cooper 

"Adversity is only an obstacle if we fail to see opportunity."  

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Celeste's Website

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