In June 2011, the Institute of Medicine (IOM) published Relieving Pain in America, the most definitive report ever focused on chronic pain. Findings from that report are staggering:
The humanistic costs simply cannot be calculated. Those who live with chronic pain lose their jobs, their families, their homes – even their sense of self. The suicide rate for those in chronic pain is 2.5 to 4 times greater than that of the general population.
The staggering statistics in that IOM Report tell only one part of the story. Meet these Kansas Citians to get a first-hand look at the realities of living with chronic pain. Isolation, depression, uncertainty, stigma – these are all hallmarks of chronic pain. Learn more about how the Center continues to respond to the epidemic of chronic pain with PAINS-KC.
In response to the IOM report, the Center convened the Pain Action Alliance to Implement a National Strategy (PAINS), a coalition of more than three dozen national organizations that agreed to work together to advance the IOM report. PAINS worked with local and state coalitions and federal agencies to establish bio-psychosocial (integrative) pain care as the standard of care.
The Center (CPB) has included the under-treatment of pain among its focus areas for more than two decades. In partnership with Truman Medical Center, CPB recruited safety net providers to be involved in this initiative. With their assistance, in early June 2013, we issued an invitation to patients living with pain and served by our clinical partners to attend an initial stakeholders’ meeting to assess interest in developing a Pain Patient-Powered Research Network (PPRN) to be supported by a grant from the Patient Centered Outcomes Research Institute (PCORI).
We expected a modest response, with six to ten attendees representing success. With less than two weeks’ notice, more than 30 individuals who live with pain themselves or whose lives are impacted by someone living with pain attended the meeting. We heard nearly three dozen individual stories, all with the common theme that pain is an unkind, unfair, frustrating ruler. They were very generous to share their stories and passionate about the possibility of being involved in an initiative that might not only improve their own situation but also that of the tens of thousands of others in our community who struggle to live with chronic pain.
At a subsequent July 2013 meeting, the group (again nearly three dozen) agreed to help move forward the development and implementation of PAINS-KC. Our safety net partners and consumer leaders continued to help identify additional participants. Meetings were and continue to be held in the evening; a light meal is served; an environment of neutrality and safety is promoted; and travel stipends are provided if needed.
Work continued on building this stakeholder group (PPRN) through the end of September, including
We celebrated submission of the PCORI proposal at the October 2013 meeting. Because neither Kansas nor Missouri had been funded, we believed we were in the “sweet spot” for funding through PCORI, but the group was assured that even if we are not funded through PCORI, we would continue to seek other sources of funding to continue this important work.
PAINS-KC will “transform the way pain is perceived, judged and treated” in Kansas City and establish patient-centered integrative pain management (based on a bio-psychosocial model) as the standard of care in our safety net clinics.
Unfortunately, the Pain Patient-Powered Research Network was not funded by PCORI, but our efforts continued. In February 2014, a strategic planning exercise resulted in Goals and Strategies.
Increase awareness and educate members of the Kansas City community about chronic pain as a disease and the IOM committee’s recommendations via a public education/ health literacy campaign.
Participate in efforts to improve clinical treatment models for chronic pain
Increase access to bio-psychosocial or integrative pain management in the Kansas City Metropolitan Area.
Create an infrastructure to support the psychosocial needs of those living with chronic pain and their families.
GUIDING PRINCIPLES were agreed upon in May 2014.
PAINS-KC: Transforming the way pain is perceived, judged and treated.
PAINS-KC Citizen Leaders gather monthly for education, awareness and advocacy.
Comprehensive integration pain care will
improve the lives of millions of Americans,
save billions of dollars and reduce opioid prescribing.
Contact Cindy Leyland at cleyland@PracticalBioethics.org for more information about PAINS-KC.
PAINS-KC Timeline and Accomplishments