November 3, 2009

Executive Summary

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition 2009 Outreach & Education Meeting was held on November 3, 2009, at the Bethesda North Marriott Hotel and Conference Center. The meeting brought together approximately 70 NIAMS Coalition members representing more than 50 different Coalition organizations. The purpose of the meeting was to provide the NIAMS Coalition members an opportunity to network and share best practices on the importance of connecting science to the public, while learning more about the inner workings of the National Institutes of Health (NIH) and NIAMS.

Photo of Coalition members and NIAMS staff

Melanie Martinez, M.P.A., NIAMS Public Liaison Officer, and Sheila Rittenberg of the National Psoriasis Foundation and co-chair of the NIAMS Coalition, welcomed the NIAMS Coalition members to the meeting. Ms. Rittenberg challenged the participants to use the material presented in the meeting to build upon the good work their organizations are already doing, and to reach out to their colleagues for shared resources, while contributing to the strength of the NIAMS Coalition.

NIAMS Director Stephen I. Katz, M.D., Ph.D., presented the NIAMS Coalition Co-Chairs Amy Melnick of the Arthritis Foundation and Ms. Rittenberg with plaques to recognize their service and the revitalization of the Coalition over the past 2 years.

State of the Institute

Dr. Katz provided a State of the Institute address presenting information about NIH and NIAMS, including the Institute's mission and budget, as well as the current status of stem cell research, rare disease efforts, clinical trials, and partnerships. He stated that a key goal of the Institute and of this meeting was to work toward engaging the public, educating those who can benefit from the research done at NIAMS, and communicating research goals and findings in plain language. He mentioned the importance of involving both scientific and professional and voluntary communities, including the NIAMS Coalition, as essential to achieving this goal.

NIAMS Deputy Director Robert H. Carter, M.D., discussed comparative effectiveness research, and explained the impact of the American Recovery and Reinvestment Act of 2009 (ARRA). He asked members to advise NIAMS of success stories related to ARRA funds and to help share these stories with the public.

Anita Linde, M.P.P., Director of the Office of Science Policy and Planning at NIAMS, discussed the NIAMS planning process and new long-range plan for FY 2010-2014. Ms. Linde outlined the purpose of the long-range plan and how it helps inform priority setting and reporting activities at the Institute. She outlined the five core topic areas and described the importance of NIAMS' collaborations and partnerships in developing the plan. Ms. Linde concluded by encouraging Coalition members to provide comments on the plan once it is posted on the NIAMS web site in December.

Inner Workings of NIAMS/NIH

Joan A. McGowan, Ph.D., Director of the NIAMS Division of Musculoskeletal Diseases, gave an overview of grant mechanisms at NIH and NIAMS, describing what they are and how they work. She outlined the specific purpose of each type of grant, its place in the career cycle of an investigator, and how and when an applicant might engage NIH program and review staff. Dr. McGowan directed conference participants to the NIH grants Web page for more information, and also referenced the NIAMS Update as a good resource for the most up-to-date announcements.

Dr. McGowan provided information on the NIH peer review process, outlining the specific steps an application goes through and the role of the scientific review officer. She familiarized attendees with the kinds of academic scientists who review applications, the criteria they use, and the ways an application is scored. She mentioned the recent enhancements of peer review — including the new templates for structured critiques, the increased emphasis on potential scientific impact, and the decreased emphasis on methodological details.

NIH and NIAMS Information and Resources

James Onken, Ph.D., Special Assistant to the Acting Deputy Director in the Office of Extramural Research at NIH demonstrated the redesigned NIH information system called RePORT (Research Portfolio Online Reporting Tool). Dr. Onken described this searchable database as a way for NIH stakeholders to have quick and easy access to basic information on NIH programs, including reports, data, and analyses. He provided a step-by-step orientation to the Web site, highlighting the common classification schemes, and the different filters that can be applied to find information specific to a particular NIH Institute or Center, funding mechanism, or topic of interest.

Janet S. Austin, Ph.D., Director of the Office of Communications and Public Liaison at NIAMS, gave a brief overview of the variety of information and resources offered by NIAMS. Dr. Austin described the NIAMS brochures and fact sheets available both in hard-copy and electronic form on the NIAMS Web site, as well as the "Spotlight on Research" stories and press releases, the audio publications, podcasts, and vodcasts. She highlighted the "NIAMS ARRA Chronicles," and the opportunities for grantees and organizations to submit their own ARRA success stories. Dr. Austin also described two NIAMS electronic newsletters, the NIAMS Update and the Multicultural Outreach News, and the print publication IRPartners, which are all available through free subscriptions. Finally, Dr. Austin addressed a recent cooperative effort with CBS Cares and the producers of the Tony Award-winning musical Hair to produce public service announcements about bone health, and an initiative for girls ages 9 to 16 known as "Best Bones Forever."

Keynote Address

Keynote speaker, the Honorable John Edward Porter, the Chair of Research!America, spoke to the importance of supporting health science research. He began with his own background, explaining that his father as a child had polio, and wore a brace. The experience of seeing the difference a vaccine could make in one's life made Mr. Porter realize how important it was to invest in research and medicine. This helped Mr. Porter become an important voice as a U.S. Congressman during the doubling of the NIH budget. He advocated for building a bridge between the public and the scientific community, and also between those in politics and those in science. Mr. Porter closed by outlining suggested steps the Coalition members could take to become active supporters of research in their own communities. "You are essential to the change," he said.

National Multicultural Outreach Initiative

Mimi Lising, M.P.H, Multicultural Health Educator in the Office of Communications and Public Liaison at NIAMS, provided an overview of the National Multicultural Outreach Initiative. Ms. Lising detailed the initiative's goals, focus, and target audiences. She expressed NIAMS' interest in partnering with Coalition members in the development of cross-cutting materials and reaching out to populations targeted by the initiative. Ms. Lising stated that Coalition members will play a crucial role in the formation of this initiative, and said she looked forward to hearing from interested members.

Sharing Best Practices

Afternoon breakout sessions were offered, providing Coalition members the opportunity to learn and share best practices. Breakout session 1, titled "Collaboration and Engagement: Working with NIH and Beyond," focused on the importance of collaborating with other organizations, supporting young investigators, and building Federal partnerships to encourage clinical research. Annie Kennedy from the Muscular Dystrophy Association, Anne Elderkin of the American Society for Bone and Mineral Research, and Lisa Kaeser from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, participated on the panel providing a variety of examples of how each of their organizations has successfully built these collaborations.

Breakout session 2, titled "Information and Resources: Communicating Your Research Message to Stakeholders," addressed the development and dissemination of research-based information and materials to stakeholders. Robert Riggs of the Scleroderma Foundation, Charlene Waldman from the Paget Foundation, and Dr. Austin gave their own impressions and best practices of the materials their organizations have adapted for specific audiences, and the effect of social media in spreading their message.

Concluding Remarks

Ms. Melnick and Ms. Rittenberg closed the meeting with an overview of the activities of the Coalition to date, and the structure and need for additional volunteers on the Coalition's steering committee. The co-chairs also announced the transition of a new co-chair, Annie Kennedy of the Muscular Dystrophy Association, who will replace Ms. Melnick.

Dr. Austin thanked the participants for attending, and for energizing those in NIAMS and the general public with their passion. She thanked Coalition co-chairs Ms. Melnick and Ms. Rittenberg for their work over the past years, and all the people who helped plan the meeting. She closed by reminding Coalition members that "We work for you."

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