October 11, 2011

Executive Summary

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition 2011 Outreach & Education Meeting: Creating Connections for Science, was held on October 11, 2011, at the Bethesda Marriott Hotel. The NIAMS Coalition is an independent group of more than 70 professional and voluntary organizations concerned with the programs of the NIAMS. Organized by the NIAMS, more than 50 individuals representing 40 different Coalition organizations attended the meeting. Attendees were able to expand their knowledge of the inner workings of the National Institutes of Health (NIH) and the NIAMS, participate in networking opportunities and share best practices in collaborating with the Institute.

The NIAMS Coalition meeting "provides a unique forum for organizations representing a wide array of patients, advocates, researchers and medical professionals to exchange and gather best practices, and to ensure that we speak with a unified voice toward our shared goal," said Annie Kennedy, of the Muscular Dystrophy Association and outgoing Co-chair of the NIAMS Coalition.

Photo of Coalition members and NIAMS staff


Anita Linde, M.P.P., Acting Director of the NIAMS Office of Communications and Public Liaison and Director of the Office of Science Policy and Planning, joined Ms. Kennedy in welcoming the NIAMS Coalition members to the meeting. Kennedy then provided a description of the structure and recent activities of the Coalition. She encouraged the attendees to become more engaged in the NIAMS Coalition by participating in teleconferences, taking on a leadership role, sharing ideas and helping the Coalition to grow.

"A rising tide lifts all boats," said Ms. Kennedy of the Coalition’s mission, "especially when those boats are filled with people who care about arthritis, musculoskeletal and skin diseases."

NIAMS Director, Stephen I. Katz, M.D., Ph.D., presented Kennedy with a plaque to recognize her service and her role in helping to revitalize the Coalition over the past two years. Nate Thomas, P.T., D.P.T., M.B.A., of the American Physical Therapy Association will replace Kennedy as the incoming Coalition co-chair, joining Tiffany Schmidt, J.D., M.B.A., of the American College of Rheumatology.

State of the Institute

Dr. Katz provided a State of the Institute address that included information about the NIH and the NIAMS, and focused on the mission and budget, outcomes from the American Recovery and Reinvestment Act of 2009 (ARRA), ongoing research and organizational activities, and partnerships. He pointed out that ARRA provided $10.4 billion in additional funds for research at the NIH, and 50,000 jobs were created or retained through NIH-ARRA investments. Dr. Katz also highlighted the current status of stem cell research and the NIH Center for Regenerative Medicine (NIH-CRM); musculoskeletal, rheumatic and skin disease research conducted in the NIH Clinical and Translational Science Awards (CTSA) program; clinical trials; and events that benefited from collaboration with the NIAMS Coalition, including the NIAMS 25th Anniversary Scientific Symposium and Congressional Briefing, and the NIAMS Awareness Day for Hill staff.

"Every voice does count," said Dr. Katz. "You are our best links to the community."

National Multicultural Outreach Initiative

Robert H. Carter, M.D., NIAMS Deputy Director, and Mimi Lising, M.P.H, Multicultural Health Educator in the Office of Communications and Public Liaison at NIAMS, provided an overview of the NIAMS National Multicultural Outreach Initiative. Dr. Carter outlined the initiative’s goals and focus areas. Ms. Lising detailed the research findings, product development, field testing, national distribution and evaluation efforts. Both invited Coalition members to continue to play a vital role in the dissemination of messages and materials, as well as outreach to populations targeted by the Initiative.

NIH and NIAMS Information and Resources

Kathy Hudson, Ph.D., NIH Deputy Director for Science, Outreach and Policy, updated participants on the proposed National Center for Advancing Translational Sciences (NCATS) at the NIH. She spoke of the need "to figure out new ways to get across the valley of death," referring to the barriers of cost, time and high failure rates that often hinder new drug development. Dr. Hudson provided examples of how NCATS could help generate innovative methods and technologies to enhance the development, testing and implementation of diagnostics and therapeutics. In addition, it could play a role in identifying potential roadblocks in translational biomedical research by encouraging regulatory reform to enhance the protection of human research subjects, "rescuing and repurposing" abandoned and approved therapeutics, and developing a tissue chip to screen for safe, effective drugs.

John Burklow, Director of the NIH’s Office of Communications and Public Liaison, and Pat White, Director of the NIH’s Office of Legislative Policy and Analysis, gave their perspectives on communicating the merits of biomedical research. Mr. Burklow discussed the issues and challenges of finding ways for the media and the public to make the connection between important scientific discoveries and the NIH. "We want to make sure that when people read about all the great discoveries that we have supported, they make the connection to the NIH," said Mr. Burklow. "We must explain the relevance of science and demonstrate the connections among science, researchers and the impact that NIH research has on the community level." Mr. White identified the fiscal and political challenges facing NIH. "We’ve never had more scientific research opportunities, but they’ve come during a very challenging budget time." NIH is working to educate new and veteran members of Congress through interactive meetings and events, finding "emerging champions" and emphasizing the NIH’s contributions to future economic growth and global competitiveness. "Once you can make the argument, people see the importance of the NIH," said Mr. White.

Sharing Best Practices

Throughout the day, Ms. Kennedy, along with Ms. Schmidt and Dr. Thomas, helped to facilitate networking and the informal sharing of best practices among the groups.

Afternoon breakout sessions were offered, providing Coalition members the opportunity to learn about and discuss key issues.

Breakout session 1, titled "Public/Private Partnerships: Collaborations between NIH and Coalition Member Groups," was led by Rebecca Minnillo, D.M., M.P.A., from the Society for Investigative Dermatology. She described how her organization collaborates with the NIH and other dermatology subspecialty groups and dermatologic organizations by sharing resources and connecting with skin disorder patient groups. Dr. Minnillo is a former Co-chair of the NIAMS Coalition and a current Steering Committee member.

Breakout session 2, titled "NIH Toolbox: Understanding and Navigating the NIH Grants Process," provided an overview of the lifecycle of a grant application. Amanda Boyce, Ph.D., Director of the NIAMS Muscle Development and Physiology Program, detailed the roles of key program staff, the peer review process, various funding opportunities—especially those grant mechanisms supported by the NIAMS—and helpful online resources.

Breakout session 3, titled "Expanding Your Programs While Tightening Your Belt: How Coalition Member Groups Have Adjusted to the Changing Budget Landscape," addressed measures that advocacy organizations could consider during difficult financial times. Sheila Rittenberg from the National Psoriasis Foundation shared experiences from her organization. Ms. Rittenberg is a former Co-chair of the NIAMS Coalition and a current Steering Committee member.

Breakout session 4, titled "Making the Most of Social Media: Leveraging Social Media as a Resource in Health Communication and Advocacy," focused on how to effectively use social media. Sara J. Chang of the Lupus Foundation of America shared innovative strategies that her group uses to communicate to her organization’s constituents, and the effect of social media in spreading their message. Ms. Chang is a current Steering Committee member.

Concluding Remarks

Ms. Schmidt closed the meeting by thanking the NIAMS staff, the Coalition’s Steering Committee and past Co-chairs, and highlighted key points from some of the day’s speakers. "We really appreciate everything Dr. Katz and the NIAMS staff do to facilitate this gathering where we can all come together and find out what works best to spread the word about NIH and NIAMS."

Ms. Linde thanked the participants for attending, and for their passion, commitment, dedication and energy to their organizations, the NIH and patients. She thanked the meeting organizers and speakers, and acknowledged the Coalition Co-chairs for their work over the past years while welcoming incoming Co-chair, Dr. Nate Thomas. She closed by reminding Coalition members that all of NIAMS’s efforts belong to them, and welcomed opportunities for partnerships. "We’re collectively greater when we work in partnership and synergy together."

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