by Myra Christopher

Scientific meetings are critically important to the movement to “transform the way pain is perceived, judged and treated.”  However, the reality is that, as the aforementioned comparative effectiveness review prepared for the NIH Pathways to Prevention Workshop demonstrates, the evidence on long-term opioid therapy is very limited and we need more of it.  While true, we cannot use the paucity of data as an excuse not to act.

PAINS is committed to supporting more research; based on data that already exists and recommendations made in the IOM report Relieving Pain in America. We are also absolutely committed to moving chronic pain management from a biomedical model, i.e., prescription medications, nerve blocks, surgeries and other interventional approaches, to a bio-psychosocial approach as called for in the IOM report. A bio-psychosocial approach includes biomedical options, as well as physical and occupational therapy, behavioral health, complementary and alternative therapies such as acupuncture, diet and nutritional counseling.  We believe epiphenomena of this transition will likely be fewer medications being prescribed.  We are very aware, however, that many who live with chronic pain find these medications to be essential.  We also know that those who use opioids are often stigmatized, so much so, that Relieving Pain in America identified this stigmatization as a barrier to care. In 2010, Carole Upsher and colleagues interviewed 72 chronic pain patients about their experiences.  Their findings, published in the Journal Pain Medicine(1) were that those they interviewed felt “disrespected and distrusted, suspected of drug seeking, and having their symptoms dismissed as trivial and/or not warranting medical care.”

CEHCUP meets with RPnKC's Citizen/Leader Advisory Group

CEHCUP’s Dr. Mugar Geana meets with RPnKC’s Citizen/Leader Advisory Group to outline the pilot communication project to destigmatize pain

Based on input received from those at PAINS’ Annual Meeting in January 2014, PAINS established “destigmatizing those who live with chronic pain” as a strategic goal.  To begin this work, PAINS has contracted with the Center for Excellence in Health Communication to Underserved Populations (CEHCUP) at the Kansas University of Journalism led by Mugur Geana, MD, PhD to develop a communication strategy that will piloted as part of Relieving Pain in Kansas City (RPnKC).  Recently, Dr. Geana and one of his colleagues met with RPnKC’s Citizen/Leader Advisory Group. He shared with them that CEHCUP has surveyed 950 newspaper articles, 460+ news wire stories, more than 700 TV transcripts, and 1115 blog from 2012-2013 to find out what is being said about chronic pain and those who live with this disease.  They found mixed messages, but a common theme among them substantiated the perceptions reported in Upsher’s study.  Dr. Geana asked for the help of the Citizen/Leaders and outlined CEHCUP’s strategy including developing a research instrument; holding interviews with people living with chronic pain, primary care providers, and other stakeholders; creating messages for a comprehensive communication effort that will not only communicate but “persuade”; testing the messages; piloting the plan; and evaluating its impact.  He shared with them that from the Kansas City experience, PAINS and CEHCUP will develop a “Strategic Communication Toolkit” to be shared with community- and- state-based initiatives across the country to destigmatize those who live with chronic pain.

Endnote:  (1) Upsher, C., Bacigalupe, G., Luckmann, R.  “They Don’t Want Anything to Do with You”: Patient views of Primary Care