Thursday, October 16, 2014
Walter Koroshetz, NINDS – Welcome and Introductions
Dr. Koroshetz introduced himself to the pain consortium members. Dr. Koroshetz was the Deputy Director to Dr. Story Landis and was serving as the Acting Director at NINDS since Dr. Landis’ retirement on October 3rd. Dr. Koroshetz was announced as the Director at NINDS on June 11, 2015. View Dr. Koroshetz’ bio for more information.
Wen Chen, NIA – Discussion: Geroscience Book Chapter
Dr. Chen presented information to the group regarding a Geroscience book that is in preparation. The book will be organized by organs and systems, and pain in the elderly will have a dedicated chapter. A geroscience summit meeting that helped to inform the book was held in 2013.
Ralph Nitkin, NCMRR (NICHD) - NCMRR and Pain Research
Dr. Nitkin serves as the Acting Director of the National Center for Medical Rehabilitation Research (NCMRR) that is located within the Eunice K. Shriver National Institute of Child Health and Human Development (NICHD). He presented an overview of the NCMRR, which was established in 1990 to foster development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of persons with disabilities. A particular focus of the NCMRR is on people with chronic physical disabilities (e.g. developmental conditions, injury, musculoskeletal and joint conditions, and degenerative conditions). Medical rehab patients are generally treated by physiatrists, physical and occupational therapists, and orthopedists. From the medical rehab perspective, acute pain can be ‘useful’, however, pain is a tremendous clinical issue and strategies for coping with chronic pain are needed. The impact of chronic pain on function, activities & Quality of Life is of importance as well as pain due to overuse injuries, spasms, contractures & joint pain. The research issues in which NCMRR is interested include: non-pharmacological therapies; multidisciplinary approaches; self-management; negative spirals involving pain, depression and inactivity; abnormal movements and altered activity; techniques of nerve, muscle and brain stimulation; environmental supports and barriers; phantom limb pain; neuroma pain; addiction or overdose; and health disparities in assessment, treatment, and experience.
Dr. Nitkin emphasized that the NCMRR is interested in coordination of rehabilitation research across the NIH and has dedicated funds to support rehab research and promote research initiatives with other ICs.
The group had a discussion on existing programs such as the research infrastructure program and the potential involvement of the NCMRR in the development of the research strategy for pain.
Cheryse Sankar, NINDS – Update: IPRP Database, Coding, 2012 Data Upload
Dr. Sankar updated the group on the status of the Interagency Pain Research Portfolio. Grants from FY2011 are available on the public database and earlier this year, pain consortium representatives and IPRCC agency representatives were asked to identify and code pain-related grants for FY2012 based on the IPRP ontology that was created. The process was formalized by holding a Q&A session with grant coders and providing detailed instructions and spreadsheet template. In addition, some quality control steps were taken to evaluate consistency of grant coding from year to year as well as consistency between coders. Finally, coders were asked to provide feedback and suggestions to the coding process and the IPRP ontology. All of the FY12 grants are now coded and the spreadsheet is being formatted so that the data can be uploaded onto the public database. The quality control and feedback provided some insight on ways to improve the ontology in order to improve consistency and avoid confusion or excessive inter-rater discrepancies. The changes included merging the condition categories of nociception & not pain condition specific and separating the Tier 2 (secondary) categories into scientific and non-scientific categories. The non-scientific categories will include: unique populations, minority health research, women’s health, training grants & a newly added category: conferences/seminars. The large secondary category ‘Neurobiological/Glial Mechanisms’ may be broken down into different subcategories. The group discussed several options of breaking it down to smaller subsets. A work group will be assembled to revisit this idea and determine what is most useful for the purposes of the portfolio.
David Thomas, NIDA – Discussion: Recommendations and next steps from the Pathways to Prevention Workshop on Long Term Opioids for Chronic Pain
Dr. Thomas opened by mentioning the ‘Fed Up’ rally that took place in Washington, DC, where the focus was on misuse/addiction and overdose of opioid drugs. Thus, the Pathways to Prevention Workshop on the Role of Opioids in the treatment of chronic pain was very timely and a subject of great public concern. Development of this workshop began in September 2012 and involved 3 working groups, which consisted of federal and non-federal members. The final working group met in August 2013 to determine who would serve on the unbiased jury for the workshop. Dr. Thomas acknowledged the role of Dr. Richard Denisco (1954-2014) in the inception of this workshop and his continued support of it prior to his passing early this year.
The Agency for Healthcare Research and Quality (AHRQ) performed an extensive literature review entitled ‘The Effectiveness and Risks of Long-Term Opioid Treatment of Chronic Pain’ which was released immediately prior to the workshop. The workshop was held on September 29-30th with introductions by Dr. Nora Volkow, Director of NIDA and Dr. Story Landis, Director of NINDS. The panel met immediately after the workshop to draft a report. Panel recommendations included enhanced research, more effective research tools and more effective use of non-opioid pain management. The draft report was available for public comment for approximately 2 weeks, ending on October 17th. The final report is expected to be released in November.
Linda Porter, NINDS – Update: IPRCC activities: National Pain Strategy and Pain Research Strategy
Dr. Porter gave an overview of the IPRCC meeting that was held on September 24th. The meeting first focused on the completion of the National Pain Strategy (NPS), which was developed by more than 80 experts organized into an Oversight Panel and 6 thematic working groups (Professional Education & Training; Care & Prevention; Disparities; Population Research; Service Delivery & Reimbursement; and Public Education & Communication). The NPS report was approved by the IPRCC and is being sent to senior officials in the respective IPRCC agencies. The report was sent to HHS and after internal review and clearance, it will be released for public comment. Following the public comment period, there will be a communication plan for dissemination of the report and implementation of the recommendations. One achievement that has already come out of the NPS is that 3 pain-related questions have been accepted for HP2020 and it is anticipated that the HP2030 questionnaire will include a chronic pain topic. The NPS covered all major aspects of pain except for the research strategy with the understanding that the Interagency Pain Research Coordinating Committee (IPRCC) consists of qualified pain experts that are best suited to develop a research strategy for pain. The second half of the meeting was devoted to discussing the creation of a national research strategy. Based on the major role of NIH in research, Dr. Porter suggested that a PC working group, along with representatives from other federal agencies, be involved in the development of the framework for the research strategy. The next steps are to identify interested representatives and hold a conference call to provide the structure for the research strategy.
Linda Porter, NINDS – Discussion: Recommendations from the Overlapping Pain Conditions Investigator’s Meeting
Dr. Porter led the discussion on the investigators’ meeting on overlapping pain conditions which was held on September 16-17th. The purpose of the meeting was to develop approaches and models that leverage existing research resources and data repositories to better collect, analyze and integrate data that will enhance the research effort and ultimately serve to improve clinical management of people with pain.
The group came up with a number of recommendations which included: a) develop an early life exposures assessment tool; b) explore utility of natural language queries to mine pain data from EMRs; c) develop a “minimal set of common data elements”; d) develop a case definition for overlapping pain; e) perform validation studies on the data elements through pilot studies that leverage existing data; f) list available resources for pain data/bio-samples on the NIH Pain Consortium website; g) post a link to information submission and access to dbGAP; h) explore opportunities to develop a guidance document for IRB requirements relevant to multi-site patient data registries; and i) explore means to better link PROMIS elements to EHRs for outcomes research. Dr. Porter asked the group to consider these recommendations and how they can contribute to implementing some of them. There was discussion about the minimal set of common data elements, with the understanding that this had just been done with low back pain, and lessons and suggestions may be gleaned from that process to inform the overlapping pain conditions common data elements. The group emphasized that prior to developing these common data elements there should be considerable thought into plans to ensure their use in clinical research.
All – Discussion: Topic Areas for Symposium
The 10th Annual Pain Consortium Symposium will be held on May 26-27th, 2015
In the interest of time, this topic was held for the upcoming coordinating committee meeting which will be devoted to identifying topics for the10th annual consortium.