According to the Institute of Medicine, 100 million people live with chronic pain. Controversy surrounds pain interventions and how pain care is delivered. We have begun to build a patient-built, patient-directed, patient-centered research community to develop comparative effectiveness research (CER) questions based on patients’/caregivers’ experiences with pain interventions and how their pain care is delivered.
The NFCPA shares information with and seeks feedback from its current 150,000-plus e-newsletter subscribers, 170,500+ Facebook likes, 6,025+ Twitter followers, two closed Facebook patient support/advocacy communities with 3,625+ members, and our Inspire communities (Fibromyalgia with 8,171 members and Chronic Pain with 6,946 members) where we continue to inform patients about PCORI, CER, and the role patients and caregivers can play in pain research. Webinars will be used to inform, educate, and engage current and new members in the discussion. In the Pain Patient-Centered Research Community (PPCRC), which primarily comprises patient and caregiver researchers, a patient facilitator will help members of our closed Facebook communities refine CER ideas about interventions that work for their pain experience, how they want pain care delivered, and what they want studied to address these chronic pain issues.
Our research advisory board (RAB) will review the proposed research ideas derived from the research community and, based on the available evidence, together they will narrow the research community’s questions down to a manageable number of choices. The NFCPA will bring those choices back to the broader pain community for further input through social media and other vehicles. Based on that input, the RAB and PPCRC will select the final CER question(s).