Side note: If you are a pain patient that resides in the Kansas City or surrounding area, please leave a comment on this blog so I can give up specifics regarding the next meeting
How fitting that the opportunity to support the Center for Practical Bioethics initiative would arrive during “Pain Awareness Month.” Following is my letter as a patient participating in PAINS-KC.
The Pain Action Alliance to Implement a National Strategy in Kansas City (PAINS-KC) is an emerging patient-powered, outcomes and clinical data research network (PPRN) based on a collaborative, community-driven, community-based participatory research model.
As participants and patients in this patient powered research network, PAINS-KC, we gather together 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, and Research.” We are excited that 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. We feel privileged to have an opportunity to use our voice to influence research on therapies, coordinated care, alternative and integrative medicine, and to receive quality care without bias. These are principles we believe those at the Center for Practical Bioethics holds in their hands and in their hearts.
We are an eclectic group from the greater KC area which includes local pain group leaders, and patients suffering with a variety of chronic pain conditions, and we 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. 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. 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, but we also know this can only be accomplished as a collaborative effort.
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; those that fit within our own conceptual framework. 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. Not only pain patient in Kansas City, but EVERY patient that suffers with intractable pain deserves access to the same treatment. We believe we can set an example that will resonate across America, and we can do that best by participating, despite the obstacles we face every day. 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 data bases that come together to support the Center for Practical Bioethics in this endeavor. We are privileged to have the support of so many as outlined in “Executive Summary” submitted in an effort to obtain the PCORI grant.
Sincerely, Celeste Cooper