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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