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Tuesday, June 10, 2003

The first meeting of the revitalized NIH Pain Consortium was convened on Tuesday, June 10, 2003 from 3:00 - 4:30 pm. Thirty-three individuals representing 18 NIH Institutes, Centers (ICs), and NIH OD Offices participated in the meeting.

  1. Welcome and Introductions

Dr. Lawrence Tabak, Director National Institute of Dental and Craniofacial Research (NIDCR) welcomed the group on behalf of himself and his fellow Pain Consortium co-chairs Dr. Audrey Penn, Acting Director, National Institute of Neurological Disorders and Stroke (NINDS), and Dr. Patricia Grady, Director, National Institute of Nursing Research (NINR). He noted the diversity of participation and representation across NIH, and acknowledged that the participants were in attendance because they believed in the need for and importance of pain research, and the need for ensuring a comprehensive and coordinated portfolio of research at NIH in this area.

Recognizing the presence of Dr. Elias Zerhouni, Director, NIH, Dr. Tabak thanked him for joining the group at its first meeting to give the members their charge.

  1. Charge to the Consortium Members

Dr. Zerhouni began his remarks by stating his support for revitalization of the NIH Pain Consortium. He noted his experience dealing with pain management, particularly as it related to research efforts to image pain, and his role in trying to objectify pain via development of the mandatory pain scale. He stated that chronic pain is a critical national problem, is a main contributor to deterioration in quality of life and places a burden on the health care system. Noting that chronic pain is a difficult health and research issue, Dr. Zerhouni said he was amazed at the amount of knowledge regarding pain that we do not have and that we do not understand pain at a fundamental level as we do other diseases and conditions.

Given these considerations, he was very pleased that NIH has the unique opportunity to shape the agenda for pain research to make a difference in the day-to-day lives of those suffering from chronic pain conditions. Dr. Zerhouni pointed out that he has been prompting all of those present and their colleagues through the various NIH Roadmap activities to work together as ICs to maximize resources, pool the best scientific thinking, and achieve the greatest outcomes as efficiently and economically as possible. The NIH Pain Consortium is an example of a classic trans-NIH collaboration that fits the Roadmap model to facilitate the type of research that no one IC can do by itself. The group has to start by assessing the current portfolio to identify areas to advance the field of pain research. They should address areas of emphases and portfolio balance, as well as identifying the barriers to a comprehensive approach to pain research. In addressing balance, the group should also consider the talent pool of researchers involved in the field to see if the intellectual capital is adequate and broad-based. He noted that these latter considerations are what are putting limits on fields such as pain research, not the lack of resources.

In closing, he stated that pain research was a quintessential multidisciplinary research area that would benefit from the involvement and innovation of many disciplines, and that the Consortium represented the type of 'glue' undertakings and research areas that he is pushing to bring multiple ICs together. He asked the group to keep him apprised of their progress.

Dr. Tabak then asked all those present to introduce themselves and briefly state their interests and roles as they related to pain research. He assured the group that this would not be a committee for the sake of just having a committee, that there was real work to do, as would be discussed during the remainder of the meeting.

  1. Discuss Overall Organization and Goals of the Pain Consortium

Dr. Grady reviewed the following goals for the Pain Consortium:

  • To develop a comprehensive and forward-thinking pain research agenda for the NIH, one that builds on what we have learned from our past efforts.
  • To identify key opportunities in pain research, particularly those that provide for multidisciplinary and trans-NIH participation.
  • To increase visibility for pain research,both within the NIH intramural and extramural communities, as well as our outside the NIH. The latter audiences include our various pain advocacy and patient groups who have expressed their interests through scientific and legislative channels.
  • To pursue the pain research agenda through Public, Private partnerships, where ever applicable. This underscores a key dynamic that has been reinforced and encouraged through the Roadmap process.

Dr. Grady identified two major issues for the pain Consortium and its members:

  • To identify how the group can and will interface with the various NIH Roadmap activities.
  • To determine with whom and how best to engage in partnerships with other HHS and federal agencies with a role in chronic pain.

The meeting was then opened for discussion. Questions and points raised included the following:

  • How does the group envision that the Roadmap would tie into the Consortium's activities? Responses acknowledge that
    • the Consortium has both intramural and extramural interests at hand and that the Roadmap applies across the board, providing opportunities for synergy to move the field forward.
    • that the Roadmap for Clinical Research Workforce was pushing for training physician scientists and this field would benefit from that as well.
    • Dr. Zerhouni informed the group that the Roadmap areas were selected based on their commonalities that there were areas of convergence across science and therefore across pain research. So these exercises will force us to look at current activities/portfolio and prioritize for the future. He cautioned the group not to be too general to be practical in choosing appropriate levels of granularlity.
  • There is a great spectrum represented here in terms of research aimed at treatment and research aimed at figuring out the 'why' of chronic vs. acute pain.
  • That FDA should be included in the group given their role in approving pain treatments/medications.
  • That NIH needs better procedures earlier in the process for co-funding and collaboration. Internal NIH accounting procedures make it difficult for all co-funding ICs to get credit for their contributions. Dr. Penn noted that the co-chairs may have to address this directly with their fellow IC directors.
  • That there were IC resources other than dollars that could be used collaboratively by the group. An example given was NIDCR's intramural pain program utilizing NIDA's drug development/approval mechanism for one of their studies.

Drs. Tabak and Zerhouni questioned the group why the Pain Consortium didn't reach its full potential the last time. Responses noted that there was no budget for the group's activities and that the participants did not meet on a regular basis as a consortium; rather pain researchers met with each other directly. It was also noted that the past Consortium felt more like a grass roots effort, whereas the current Consortium represented a commitment from the ICs a top down and bottom up commitment to the goals of the consortium. A final comment noted that the Consortium was mandated the last time, whereas it was a voluntary commitment this time, which made a different in terms of motivation and incentive. With regard to a budget, Dr. Tabak stated that he believed the money would follow the development of compelling ideas from the Consortium, particularly those that tied back to the Roadmap goals and initiatives.

  1. Approaches to Defining and Prioritizing Overarching Problems and Unmet Needs in Pain Research; and Overview of IC Interests and Portfolios in Pain Research

Dr. Tabak asked each IC and OD office represented to give a brief overview of their pain research portfolios and interests. He noted that we would be discussing and ultimately requesting a detailed inventory from all the participants.

Representatives from the following NIH entities gave summaries of their pain research activities, in many cases emphasizing both intramural and extramural portfolios: NCI, NIDA, NCCAM, NIAMS, CC, NIBIB, NICHD, NIDCR, NIMH, OTT, NIGMS, OBSSR, NCRR, NINDS, NINR, NIA, NIAAA.

In recognizing the breadth of ongoing efforts, Dr. Tabak said that we need to be thinking first, about how we can structure our inventory request to allow for comprehensive portfolio analysis, and second about the barriers that may exist for co-funding. There are both benefits and downsides to bringing common areas among ICs together that we must address. It was recognized that there are many ongoing studies, particularly clinical ones that ICs might be able to utilize to address specific pain research questions. The issue of definitions of pain and systems reactors was raised and noted as a good topic for the next meeting of the Pain Consortium.

  1. Discuss the Programmatic Means (extramural and intramural) to Address the Unmet Needs

In the interests of time, this agenda item was tabled for the next meeting.

  1. Discuss Proposed Content of Pain Consortium Website

Dr. Penn briefly reviewed for the group the contents of the existing website for the Pain Consortium [http://www1.od.nih.gov/painresearch]. It is out of date and not very comprehensive. She introduced the NINDS Webmaster, Mr. Jim Angus, and asked the group to think about what purposes the website should serve and about the various audiences and content for the website. Dr. Tabak introduced the NIDCR web and communications leads, Ms. Jody Dove and Ms. Susan Johnson.

Some initial thoughts on the website were that it clearly could serve as a key outreach mechanism to increase the visibility of pain research at NIH. It could also be designed to be interactive to serve as both a source of information for scientific professionals, advocacy groups, and individual patients, as well as a means to get input from the community. The website could disseminate: news; meeting minutes; membership lists; symposia/workshop reports; information; funding opportunities (extramural); feedback; intramural pain activities; etc.

  1. Agree on Action Items and Next Steps

Based on the afternoon's discussion, Dr. Tabak stated that the group needed to create a number of subgroups to jumpstart and address the key issues raised.

  1. In an effort to begin the all important first step of analyzing the current NIH portfolio in pain research, Dr. Tabak asked for volunteers to help outline the request for an inventory from each Pain Consortium IC/OD office, and to structure the portfolio analysis. Dr. Porter (NINDS), Ms. Kellner (NIA) and Drs. Kusiak, Dionne, and Iadarola (NIDCR) volunteered. Ms. Liffers will convene a meeting of this subgroup.
  2. To update the NIH Pain Consortium Website as a source of communication and outreach, volunteers were requested to develop a plan of action to bring back to the full Consortium. Mr. Angus (NINDS), Ms. Johnson and Dove (NIDCR), and Drs. Thomas (NIDA) and Berger (CC) volunteered. Ms. Liffers will convene a meeting of this subgroup.

The final item of discussion related to the timing/schedule of meetings for the Pain Consortium. One participant proposed monthly meetings. It was agreed that the group needed to have the IC/OD inventories of pain research in hand for the next meeting in order to use the time to discuss the portfolio analysis (strengths, weaknesses, gaps, overlap, etc.). The group was informed that we would attempt to convene the next meeting in late July.

The co-chairs thanked all in attendance for their participation. It was noted that the NIH Budget retreat was upcoming on June 20th, and that the co-chairs hoped to be able to identify the opportunities for linkage to the NIH Roadmap activities and initiatives.

The meeting adjourned at 4:50 pm.