PATIENT-CENTERED RESEARCH CAN IMPROVE CHRONIC PAIN CARE AND ADDRESS OPIOID ABUSE

Going for the Brass Ring

Last year, Joe Selby, MD, executive director of the Patient-Centered Outcomes Research Institute (PCORI), spoke to members of the NIH Interagency Pain Research Coordinating Committee (PCORI) to inform those of us on the committee about PCORI’s intentions to do more funding focused on chronic pain research. Dr. Selby said their interests were possibly in low back pain, migraine, musculoskeletal pain, and/or opioid abuse. I was elated. Then about a month ago (May 14, 2015), Dr. Selby posted a blog on the PCORI website titled, “Patient-Centered Research Can Improve Chronic Pain Care and Address Opioid Abuse.” 

I hope with all my heart that he is right; research or policy that can do both of these things is like grabbing the brass ring while on a merry-go-round. It is certainly a worthy goal but, to many, seems all but impossible. If anybody can do this, however, PCORI may have the best chance. Established by the Patient Protection/Affordable Care Act in 2010, PCORI’s mission is to “examine the relative health outcomes, clinical effectiveness, and appropriateness of different medical treatments” – particularly complex problems that threaten the health and well-being of all Americans. Chronic pain certainly meets that criterion.

In Dr. Selby’s blog, he said, “Since 2012, PCORI has built a sizeable portfolio of studies on chronic pain, two of which specifically address opioid treatment.” He went on to list some of the questions these studies have focused on:

• How can we improve patients’ ability to communicate confidently with doctors about pain and pain medication?
• What approaches to care delivery can minimize health and safety risks when long-term opioid use is considered?
• What collaborative-care approaches to pain can improve quality of life, patient satisfaction, and adherence to other treatments?
• How can we encourage patients to join and stay enrolled in integrative treatment plans that show promise of reducing chronic pain while lowering risk for opioid abuse?

He also informed readers that, in June, PCORI would be hosting “multi-stakeholder workshops” to discuss whether comparative effectiveness research (CER) can be helpful in addressing these issues. 

The week before Dr. Selby posted his blog, I was pleased to receive a letter from him inviting the Pain Action Alliance to Implement a National Strategy (PAINS) to send four representatives to two workshops in Washington, DC – one focused on low back pain and the other on long-term use of opioids in the treatment of pain. We quickly accepted, and on the morning of June 8, two members of the PAINS team and two of our Citizen/Leaders (people living with chronic pain and/or family members caring for chronic pain sufferers) went to the airport excited about traveling to our nation’s Capitol and participating in these important discussions. After six hours at the airport and our second plane cancellation due to mechanical problems in Kansas City and bad weather in DC, I emailed our PCORI contact to tell him that we would not be coming to DC, and we headed home with heavy hearts. 

The next day, I tried to participate in the opioid workshop remotely, but technical difficulties that even their “help desk” didn’t seem to be able to overcome, made it all but impossible for me to do so. I must say, however, that I am grateful to one of the meeting participants and the facilitator of the “opioid workshop” for their extraordinary efforts to include me. I am also grateful that the next day the PCORI facilitator sent me the rank-ordered questions that emerged from the workshop and gave me permission to share them. They are very interesting, and can be seen at:  

http://www.pcori.org/events/2015/prioritizing-comparative-effectiveness-research-questions-long-term-use-opioids-chronic

That afternoon I wrote to Dr. Selby to express our gratitude for PCORI’s interest in chronic pain and to explain to him why PAINS representatives were not at the workshops the day before. I said that it is our view that, “PCORI is essential to the ‘cultural transformation in the way pain is perceived, judged and treated’ called for in the IOM report, Relieving Pain in America, and echoed in the forthcoming National Pain Strategy Report.” I also invited him and/or others at PCORI who he would deem appropriate to visit Kansas City to meet with our team and PAINS’ Citizen/Leaders. I told him that our Citizen/Leader Group has met with and advised us for more than two years and that they have been enormously helpful. I encouraged him to activate the following link (and click the link there to the video, “The Faces of Pain”), so that he could meet some of these outstanding individuals:

http://practicalbioethics.org/resources/chronic-pain-resources

I also suggested that these remarkable people and others like them could be very helpful to PCORI, in fact, I believe, essential, as they build out their pain portfolio. I also offered to arrange for us to come to DC if it was not possible for them to come to Kansas City.

The ambitious goal PCORI has set -- comparative effectiveness research that will improve chronic pain care and address opioid abuse -- will require the involvement of many stakeholders. The most important among those may well be people who struggle to live with chronic pain and family members who care for them day-after-day. PCORI’s very name implies that they understand that. I look forward to hearing from Dr. Selby and welcoming him and others to Kansas City. In the meantime, I can almost hear the calliope music on the merry-go-round.

By Myra J. Christopher

Myra J. Christopher is the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and Director of PAINS.