Thursday, September 3, 2015
Linda Porter, NINDS – Federal Pain Research Strategy Framework
Dr. Porter provided background on the initiation of the federal pain research strategy. The goal of the Federal Pain Research Strategy is to develop a plan to advance the pain research agenda. This strategy also will serve to fulfill two of the IPRCC mandates: 1) identify critical gaps in basic and clinical research on the symptoms and causes of pain and 2) make recommendations to ensure that the activities of the NIH and other Federal agencies are free of unnecessary duplication of effort. In addition, this research strategy will complete the IOM Report recommendation on research that calls for an agenda for developing physiological, clinical, behavioral, psychological, outcomes and health services research and appropriate links across these domains. A federal pain research portfolio analysis and database already have been established and will be used as resources to inform the federal pain research strategy. Members from the NIH Pain Consortium and the IPRCC were a part of the initial planning process for the FPRS, which included several meetings to establish the framework. The IPRCC will give the charge to the Steering Committee, and the Steering Committee will set the charges for the individual working groups as well as inform, advise, and monitor the progress of the working groups. The IPRCC will review the working group strategies, provide feedback, and approve the overall strategy. The NINDS Office of Pain Policy will provide resources, logistics, and technical support as needed. For details on the overall structure, visit the FPRS page on the IPRCC website.
The FPRS planning group developed an overarching theme and proposed working groups. Based on the concept of a pain continuum, where pain is characterized temporally from acute to chronic pain, five working groups were proposed; 1) Prevention of acute & Chronic pain; 2) Acute Pain & Acute pain management; 3) Transition from Acute to Chronic Pain; 4) Chronic Pain & Chronic Pain Management; and 5) Disparities – which is a working group that spans across all of the working groups. The planning group identified cross-cutting issues that span across the working group topics. These include; epidemiology, diagnosis and assessment, susceptibility and resilience, mechanisms, lifespan, treatment and dissemination, and implementation. Specific cross-cutting issues were identified as most relevant for each working group. At this stage, the proposed FPRS structure has been approved by the IPRCC and the FPRS Steering Committee has been established. Drs. Linda Porter and Allan Basbaum will serve as co-chairs of the steering committee.
A Request for Information was released in August to invite public comment on broad research opportunities and needs that could have the greatest benefit for advancing the pain research within the five working group topic areas.
The next steps are to establish and charge working groups, review relevant portfolio areas, identify gaps and areas of need, and provide metrics/methods to evaluate success. The recommendations will then be presented to the IPRCC and federal agencies for approval and clearance followed by wide dissemination of the report.
Cheryse Sankar, NINDS – Update on the Interagency Pain Research Portfolio Database
Dr. Sankar provided an update on the interagency pain research portfolio (IPRP) database. The IPRP analysis and database are a federal effort to fulfill mandates given to the IPRCC. These mandates include identifying critical gaps in research, making recommendations to ensure federal agencies are free of unnecessary duplication of effort and expanding cross-cutting, collaborative research. The federal pain research portfolio analysis was initiated in 2011 using federal pain-related projects funded in FY11. An IPRP taxonomy was developed to code grants in detail. A report and database then were developed using the initial 1200+ projects. In 2014, the pain database was updated with FY12 projects. NIH and Federal representatives currently are coding FY13 and FY14 projects so that the database will be up to date by 2016. In collaboration with the NIH Library staff, a new online coding system has been developed that allows coders from individual ICs to login and code their specific projects. The projects are then reviewed and set to publish. The published projects then become publicly accessible on the database. Coding is currently in progress and review of the projects will begin in October.
Walter Koroshetz, NINDS - Pathways to Prevention/Opioid Conference follow-up on NIH research interests
Dr. Koroshetz discussed the potential of collaborating on initiatives that would address research recommendations from the pathways to prevention workshop on the role of opioids in chronic pain. The pain consortium representatives, including members of the executive committee were in favor of collaborating on this topic. The next steps will include gathering information about existing implementation research strategies such as the Sickle Cell Disease Implementation Consortium. Dr. Thomas noted that there will be a Pathways to Prevention Federal Partners Meeting in January 2016 which will convene to review the panel report from the workshop and identify opportunities for collaboration. Members from the pain consortium will participate in the meeting.
David Thomas, NIDA – Centers of Excellence in Pain Education (CoEPEs) update
Dr. Thomas gave a brief update on the Centers of Excellence in Pain Education (CoEPEs). On September 18th, 2015 the National Institutes of Health Pain Consortium completed the award process and has funded 11 health professional schools as designated CoEPEs. The CoEPEs were selected after a contract solicitation process and review. The awardees are University of Alabama at Birmingham, University of California, San Francisco, Harvard University, University of Connecticut, University of Iowa, Johns Hopkins University, University of Pennsylvania, University of Pittsburgh, University of Rochester, Southern Illinois University Edwardsville, and the University of Washington.
Sean Mackey, Stanford University – Update on Collaborative Health Outcomes Information Registry (CHOIR)
Dr. Mackey provided an update on the Collaborative Health Outcomes Information Registry (formally Health Electronic Registry of Outcomes) which is co-funded by the NIH Pain Consortium and Stanford University. A previous update which includes background on the registry was provided at the May 15th, 2014 PC meeting. As of this meeting, over 8,000 unique patients and 30,000 longitudinal data assessments have been included. The new CHOIR CAT (computerized adaptive testing) system reduces patient burden by about 73% compared to the previous Legacy instrument. Additional updates include whole genome sequencing; addition of specific condition modules; perioperative CHOIR; software-based decision support; electronic medical record integration; advanced CAT features; Quantitative Sensory Testing; and Patient Experience/Satisfaction. CHOIR has successfully expanded to multiple clinics/sites and expanded outside of the pain field. Future needs include better infrastructure, data and data integration for researchers and features affecting adoption, deployment and IT support. Future directions include an aggregated Acute and Chronic Pain Registry.