Strengthening Our Partnership With the NIAMS Coalition

December 14, 2017

Stephen I. Katz, M.D., Ph.D.
Stephen I. Katz, M.D., Ph.D.

Dear Colleagues:

The 2017 NIAMS Coalition Outreach and Education Day marked a decade since the inaugural event. From its inception, we have worked diligently to build innovative partnerships and research programs to connect science with the public. The NIAMS Coalition is a consortium of more than 90 professional and voluntary organizations that are national in scope. These groups serve as key partners in advancing our mission, and we rely on them to help further public understanding about diseases and conditions of the bones, joints, muscles and skin. This biennial event provides a forum for our Coalition members to share best practices and receive updates from the NIH and NIAMS. In October, an impressive group of 55 Coalition representatives spanning 38 different organizations came together at the NIH campus.

We were honored to hear plenary lectures from both Eric Dishman, director of the All of Us research program and Eliseo Pérez-Stable, M.D., director of the National Institute on Minority Health and Health Disparities. Mr. Dishman gave an exciting overview of current opportunities for patient engagement and partnerships as the All of Us program actively works to recruit a national research cohort of at least one million Americans. Mr. Dishman set the stage for our final speaker of the day, Dr. Pérez-Stable, who provided Coalition members insight and vision for NIH’s plans for minority health and health disparities research. Dr. Pérez-Stable stressed the importance of enhancing the visibility of research and researchers among the American public, especially scientists from underserved populations who may be underrepresented in biomedical discoveries. Both Mr. Dishman and Dr. Pérez-Stable emphasized a shared objective to produce new knowledge with the goal of developing more effective ways to prolong health and treat disease, and extend the promise of precision medicine.

NIAMS Deputy Director Robert H. Carter, M.D., moderated a panel discussion on “Success in Partnerships.” Panelists Tracy Hart, chief executive officer of the Osteogenesis Imperfecta Foundation; Suzanne Schrandt, J.D., director of patient engagement at the Arthritis Foundation; and Michael Siegel, Ph.D., vice president of research programs at the National Psoriasis Foundation each discussed the partnerships their organizations have made with and in support of the NIAMS scientific mission. The dialogue explored how Coalition organizations are advancing the research enterprise, with examples ranging from grant awards to support for new investigators to educational programs for patients.

NIAMS Coalition group

 

A poster session where Coalition members shared best practices, inventive programs and other examples of the important work they do to support the patient and research communities served as a popular new feature this year. Several NIH posters also showcased resources that organizations can leverage, such as the newly redesigned NIAMS website, the National Center for Advancing Translational Sciences toolkit for patient-focused therapy development and the National Institute of Biomedical Imaging and Bioengineering’s mobile apps.

Participants also engaged with one another during afternoon breakout sessions. We appreciated hearing our Coalition members on topics including:

  • Best practices in social media outreach.
  • Voluntary organizations and the FDA Patient-Focused Drug Development workshop process.
  • Tools and concepts in chronic disease management.
  • Implementation of the 21st Century Cures Act.

During breakout sessions, at the poster sessions and in other parts of the meeting, it was an immense pleasure to witness the energetic connections attendees made with each other, and with NIH staff. The Coalition members serve as the voices of the patients and professionals for whom we all work, making this meeting an important platform to gather feedback from some of our most dedicated stakeholders.

Although we meet with individual Coalition groups throughout the year, only these Outreach and Education meetings give us the opportunity to engage with so many of our dedicated community members, new and seasoned alike, in the same space.

Outreach and Education Day is an important way to connect with our key constituents, but it is only one of many such activities. We strive to involve Coalition members throughout our planning processes, such as scientific meetings and retreats, roundtable discussions and listening sessions, where we address research needs and opportunities across the NIAMS portfolio. In addition, some Coalition members are also called to serve on the NIAMS Advisory Council, which is comprised of scientific and lay members who have expertise in the mission areas of the Institute. Our Advisory Council helps to inform the Institute’s decision-making process and to shape new research initiatives.

I applaud our Coalition Co-chairs, Robert Riggs, chief executive officer of the Scleroderma Foundation, and Stephanie Hazlett, manager of government relations at the American Association of Orthopaedic Surgeons, for their efforts to help organize and implement this successful meeting. It is a reminder of what we can accomplish together. I look forward to building and maintaining our strong partnerships with the Coalition in the days ahead.