The Reality of Chronic Pain

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:

• At least 100 million Americans live with chronic pain;
• The financial costs of direct care and loss of productivity are between $560 and $635 billion annually.

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. 

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

• increasing diversity and representativeness;
• issues of informed consent, genetic markers, biobanks, and specimen collection;
• building an infrastructure to develop, expand, scale and sustain a patient-powered research network; and
• providing a mechanism for those who live with chronic pain and their families to give them “voice” and allow them to participate in transforming chronic pain care in our community.

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.

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. 

GUIDING PRINCIPLES were agreed upon in May 2014.

1. There is a moral imperative to treat pain. All healthcare professionals have ethical duties and obligations to address pain.
   
   
2. Prevention of chronic pain is possible and early intervention is important.
   
   
3. Chronic pain can be a disease in itself.  Chronic pain has a distinct pathology, causing changes throughout the nervous system that often worsen over time. 
   
   
4. A biopsychosocial approach is often necessary to effectively address chronic pain.
   
   
5. Primary care providers are the first line of support for chronic pain; they should treat those with chronic pain to the extent of their capacity and refer to specialists when the patient’s needs exceed their abilities.
   
   
6. The patient / provider relationship is critical to successful pain management.  Both parties have duties and obligations to the other and the relationship must be based on respect.
   
   
7. Functionality should be the focus of chronic pain care.  Patients must have realistic expectations and work with the provider to establish reasonable goals of care.
   
   
8. Self-management of pain is important and may include efforts undertaken by people with pain and may also be guided by health professionals or an established protocol.
   
   
9. Interdisciplinary assessment and treatment may produce the best results for the most severe and persistent pain problems.  The team should include the patient and his or her family when appropriate.
   
   
10. There are significant disparities in the occurrence and treatment of chronic pain that warrant special attention.
    
    
11. Health literacy is a key element of successful treatment for chronic pain.
    Proposed: Health literacy is a key element in the patient / provider relationship.
    
    
12. Patient safety is critically important in treating chronic pain, especially when using opioid therapy. Patients must be educated that there are risks associated with prescription pain medications even when they are necessary and should be used only as prescribed.
    
    
13. A public health approach, including community-based initiatives, is necessary to address the enormous impact of chronic pain in the US.

PAINS-KC Citizen Leaders gather monthly for education, awareness and advocacy.

• Working with others who live with chronic pain, Citizen Leaders share experience, knowledge and information. The supportive nature of PAINS-KC provides a safe place for generation and sharing of ideas and compassion.
  
  
• Working with research partners across the metro area, Citizen Leaders share practical lived experience to increase understanding of chronic pain and the value of including those who live with it in research from the bench to the bedside.
  
  
• Working with educators, Citizen Leaders provide a window into the need for engaged, compassionate, enlightened health care providers.
  
  
• Working with other pain advocacy organizations, PAINS-KC promotes comprehensive integrative pain management.
  
  
• Working with policymakers, PAINS-KC engages key thought leaders and decision makers to promote access to quality comprehensive care.

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

2014

• Citizen Leader Teresa Perry participated with PAINS team at the Center for Practical Bioethics’ Board/ Staff Retreat
• Public Forum featuring Judy Foreman, author of A Nation in Pain
• Several members participated in the Center for Practical Bioethics 30th Anniversary Annual Dinner Events (April 13 - 14, 2014), including appearing in the Faces of Pain video and serving on panel at Center for Practical Bioethics’ Berkley Symposium, Patients as Teachers.
• Critiqued “Healing Relationships Inquiry” research instrument.
• Kansas City Star reporter Rick Montgomery wrote Unspeakable Pain, which appeared on the front page of the Sunday edition.
• Pilot project led by Dr. Mugur Geana, Center for Excellence in Healthcare Communication at University of Kansas, to develop a research tool, brand, messages, communication plan for PAINS-KC.
• Research project with Joel Burnett, University of Kansas Medical School student, for his Clendening Fellowship, followed by article developed by Joel, Richard Payne and Michael Felix for a peer-reviewed journal based on these interviews.
• Two members participated in Kansas Partnership for Pain Management’s pilot conference in Wichita, Kansas, November 14-15, 2014, sponsored by the University of Kansas’s Department of Continuing Medical Education.
• Funded two Citizen Leaders to be certified as “train the trainers” for the Stanford Chronic Pain Self-Management program.

2015

• Presentation by the State Pain Policy Advocacy Network (SPPAN)
  re: Missouri Prescription Drug Monitoring Program (PDMP).
• Focus groups across the community for the communications plan.
• National Pain Strategy Draft report released and reviewed by PAINS-KC.
• Received PCORI Pipeline to Proposal Tier I award.
• Received AAFP Foundation Healing Relationships grant award.
• Participated in the Frank White Historic Walk/Run & Arts Festival
  in support of the local Sickle Cell Association.
• Public Forum featuring Lynn Webster, MD, author of The Painful Truth.
• Presented at Women in Pain event hosted by Turning Point.
• Hosted day-long World Café meeting (see following artist renderings of the day’s discussions).

2016

• Reviewed and provided comment to the proposed CDC Guideline for Prescribing Opioids for Chronic Pain.
• Continued working with University of Kansas School of Journalism Strategic Campaigns class – Making Pain Visible.
• Reviewed Senate Bill 483: Ensuring Patient Access and Effective Drug Enforcement Act of 2016.
• Participated in American Public Square The Painful Truth event focused on opioids.
• Received PCORI Pipeline to Proposal Tier II award.
• Public Forum featuring David Nagel, MD, author of Needless Suffering.
• Participated in modified Boot Camp Translation event to focus PCORI Tier III application.

2017

• Hosted a session on how better to communicate with healthcare providers.
• Continued participation in Healing Relationships.
• Citizen Leader Ken Babb featured in Kansas City Star.
• Participation in the Center’s Annual Dinner events.
• Received PCORI Pipeline to Proposal Tier III award.
• Public Forum featuring Lonnie Zeltzer, MD, author of Pain in Children and Young Adults: The Journey Back to Normal.

2018

• Continued participation in Healing Relationships.
• Participation in the Center’s Annual Dinner events.
• PAINS-KC Citizen Leaders (John Bell and Mary Louise Poquette) and PAINS Project Manager Cindy Leyland presented at the American Academy of Medical Acupuncturists Annual Symposium re: Advocacy.
• Researcher Andrea Nicol, MD, and PAINS Project Manager Cindy Leyland presented at the May Fibromyalgia Awareness Event sponsored by Fibromyalgia Coalition International.
• Hosted visiting artist Ingrid Bachmann.
• Created a Research Vetting Council.
• Hosted Dr. Jill Schneiderhan, Fibromyalgia Expert and Researcher.
• Participation in RareKC Project Townhall Event.
• Participation in AAFP/NRN Family Medicine and Patient Engagement Conference.
• Hosted a Together Walk to support the National Fibromyalgia & Chronic Pain Association.

2019

• Partnered with Turning Point, a program of the University of Kansas Health System.
• Agreed to work with Kim Kimminau on a response comparing sleep hygiene practices against sleep hygiene practices PLUS yoga for treatment of chronic pain to the Pain Management Effectiveness Research Network: Clinical Trial Planning and Implementation Cooperative Agreement opportunity.
• Reviewed and submitted comments on the Pain Management Best Practices Task Force Draft Report.
• Attended the RareKC Summit.
• Participated in Liberating Structures workshop to identify and prioritize training needs.
• Worked with the Alliance to Advance Comprehensive Chronic Pain (AACIPM) to continue the Integrative Pain Policy Congress.
• Identified a fair and equitable process for responding to various requests for participation by Citizen Leaders as representatives of PAINS-KC in research projects.
• Served as panelists at the Frontiers External Advisory Board (EAB).
• Reviewed suicidal ideation among those who live with chronic pain and disseminated resources.
• Continued relationship with the American Academy of Family Physicians (AAFP) in their work towards having authentic patient engagement present across the spectrum, from planning to presentation of education for their members.
• Initiated training on advocacy, comparing and contrasting personal and public advocacy.

2020

• Continued relationship with AAFP and reviewed the value of including the patient voice and characterizes the humanity that needs to be seen in healthcare.
• Participated in faculty training with AAFP and received additional training on “Creating My Story” for use in CME education.
• Continued training on advocacy.
• Because of COVID, pivoted to virtual sessions, allowing for greater engagement and inclusion of homebound persons living with pain.
• Reviewed specific language in a research article and discussed the role language can play.
• Participated in the 15th Annual NIH Pain Consortium Symposium.
• Continued work on “My Story” for the AAFP collaboration.
• Participated in the AACIPM Virtual Symposium Innovation in Person-Centered Pain Management, including presentation by Citizen Leaders on Moving from What’s the Matter WITH You? to What Matters TO YOU?
• Provided emergency assistance to a Citizen Leader whose house burned.
• Reviewed a University of Kansas Medical Center medical student’s research project on Communicating and Managing Pain.
• Pain Awareness Month – provided a list of resources for people with pain to AACIPM.
• Participated in the Virtual Seminar: Engaging Patients in the Research Process hosted by the HEAL Initiative of the NIH.
• Participated in the AACIPM Fall Symposium Equity in Access to Comprehensive Integrative Pain Management for People with Chronic Pain.