by Olivia Carter-Pokras, PhD
In 2010, I was invited to join the Institute of Medicine’s Committee on Advancing Pain Research, Care, and Education—not as an “expert” in chronic pain, but, as an epidemiologist (science of public health) and health disparities researcher. The committee was given the ambitious task to review and quantify the “public health significance of pain,” identify barriers to appropriate pain care and strategies to reduce the barriers, identify socio-demographic groups most impacted by chronic pain, discuss how to improve training of pain researchers as well as discuss public-private partnerships to address chronic pain. All in about 6 months! Three examples of personal lessons learned from that intense learning period: our national datasets had been under-utilized to document and monitor the burden of pain, many of us had been personally impacted by chronic pain or had a loved one who had, and public health interventions were rarely considered. Prevention is critical to a public health approach to chronic pain—prevention of injuries, providing appropriate treatment (including physical therapy) if needed for injuries, public education, etc. One of the most exciting public health interventions that we uncovered during our review, was Victoria Australia’s “Back Pain, Don’t Take it Lying Down” campaign. Conducted in the late 1990s, the campaign successfully reduced worker’s compensation claims and health care visits by communicating through mass media and other means several evidence-based messages to help convince people with back pain that they should not fear remaining physically active. Most importantly, the positive impact remained at least three years after the campaign ended. Why aren’t we doing more of this today?
Following the release of the IOM report in June 2011,1 I participated in PAINS meetings, as well as collaborative efforts to share what we found with the public health community,2 chronic pain researchers,3 and Congress.4 Although some valued the report for bringing national attention to chronic pain as a public health issue (e.g., 2014 Western Pain Society “Pioneer in Pain Award”), others questioned the high number of individuals impacted by chronic pain. However, other reports have also found a large number of individuals suffer from chronic or persistent pain, and several subgroups are at higher risk (e.g., women, older, overweight/obese, lower education, poorer health). As a member of the National Institute of Health’s Interagency Pain Research Coordinating Committee’s Population Research working group (2013), we addressed the question about the true burden of chronic pain by testing5 questions that could be asked by the National Health Interview Survey and adding chronic pain related objectives to Healthy People 2020—the national disease prevention and health promotion goals and objectives. Our working group is reconvening soon to discuss how Healthy People 2030 should address chronic pain.
Since our 2011 IOM report called for a “cultural transformation in the way pain is understood, assessed, and treated,” I have discussed chronic pain with my chronic disease epidemiology students, and with colleagues who conduct research on the use of opioids. I worked with an economist to examine racial and ethnic disparities in use of physical therapy among adults with chronic low back pain with funding from the University of Maryland Advance program.6,7 Funded by the Patient Centered Outcomes Research Institute (PCORI Engagement Contract T&D #3477), I collaborated with PAINS, the National Health Council, and three other academic institutions to conduct focus groups8 and a working meeting to get input from patients living with chronic pain, and chronic pain researchers, providers, and organizations regarding what should be included in cultural diversity training for patient centered outcomes researchers. Key findings included:
- Gaps exist in how patients with chronic pain communicate with researchers and health care providers
- Health literacy, culture, and diversity issues compound the problem; there are missed opportunities to connect and optimize chronic pain treatment research and care protocols.
- Specific communication techniques exist that may enhance information gathering and sharing in both clinical and research settings.
- Self-reflection and elicitation of both patient and researcher perspectives may uncover opportunities and treatment strategies for patients with chronic pain, leading to shared decision making for compassionate chronic pain care.
- Training plans for researchers/physician-scientists must be multifaceted and lifelong, and include reflections on own biases, experiences with patients, good research practices, and incorporation of patients as partners in education.
During the past eight years, there has been increasing awareness of chronic pain as a public health issue. However, to achieve that goal of a “cultural transformation” will require all of our efforts. I look forward to continuing to learn from all of you.
1 Committee on Advancing Pain Research, Care, and Education. Relieving Pain in America: A Blueprint for Transforming Prevention, Treatment, and Research. Washington DC: Institute of Medicine. 2011
2 Carter-Pokras O. Public Health Significance of Pain: a report from the Institute of Medicine. American Public Health Association. Washington, DC. 11/1/11.
3 Carter-Pokras O. Burden of Pain. Relieving Pain in America: IOM Pain Presentation (plenary session). American Academy of Pain Medicine. Palm Springs, CA. 2/25/12.
4 Carter-Pokras O. Alliance for Aging Research’s Congressional briefing on Persistent Pain. 2013.
5 Von Korff M, Scher A, Helmick C, Carter-Pokras O, Dodick D, Goulet J, Hamill-Ruth R, LeResche L, Porter L, Tait R, Terman G, Veasley C, Mackey S. United States National Pain Strategy for Population Research: Concepts, Definitions and Pilot Data. J Pain.2016 Oct;17(10):1068-80.
6 Carter-Pokras O, Chen J. Racial and ethnic disparities in utilization of physical therapy among working age adults with chronic low back pain. AcademyHealth 2013 Annual Research Meeting. Baltimore, MD. 6/23/13.
7 Carter-Pokras O, Chen J. Racial Disparities in Use of Physical Therapy among Elderly with Chronic Back Pain. American Public Health Association annual meeting, Chicago, IL, 11/2/15.
8 Carter-Pokras O, Huang D, Towle A, Leyland C, Christopher M, Dogra N… The Patient Voice in Cultural Diversity Training for Patient Centered Outcomes Researchers. The Journal of Pain 2017;18 (4), S51