Welcome and Announcements
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) held its seventh biennial Coalition Outreach and Education Meeting: Creating Connections for Science, on October 16, 2019 at the Natcher Conference Center on the main National Institutes of Health (NIH) campus in Bethesda, Md. The NIAMS Coalition is an independent group of more than 90 professional and voluntary organizations interested in programs that are under the purview of the NIAMS. More than 50 representatives from over 40 Coalition organizations attended the meeting.
Nancy Garrick, Ph.D., chief of the Science Communications and Outreach Branch (SCOB), and Colleen Dundas, public liaison officer, SCOB, welcomed attendees, expressing appreciation for the robust participation of Coalition members. They highlighted the value of these meetings in fostering new collaborations and reinvigorating relationships. In presenting the day’s agenda, Garrick highlighted the day’s speakers/topics, as well as a variety of sessions designed to promote opportunities for information flow, networking and collaboration. Carol Torgan, Ph.D., deputy chief, SCOB, followed with an overview of one of those networking opportunities—the “unconference” session.
NIAMS Coalition co-chairs Anna Hyde, vice president of advocacy for the Arthritis Foundation, and Blake McDonald, manager of congressional policy for the American Academy of Dermatology, discussed the history of the organization. The Coalition, which is more than 20 years old, has grown from the original group of five members to the current total of over 90 professional and voluntary associations. They noted the Coalition’s role in advocating for NIH and the NIAMS, raising awareness about the Institute’s efforts and offering education opportunities for members. They highlighted this meeting as a hallmark event for inspiring and fostering collaboration.
Robert Carter, M.D., acting director of NIAMS, presented a certificate of appreciation to Hyde recognizing her outstanding leadership as coalition co-chair for the past two years. Carter cited the launch of new Coalition programs and the addition of the Coalition-led Monthly Round Up, a newsletter that features activities, news and funding opportunities from both the NIAMS and Coalition organizations.
The State of the Institute
Carter provided a look at the state of the Institute, noting that this is the first Coalition meeting without Stephen I. Katz, M.D., Ph.D., former director of NIAMS. Carter recalled that Steve cherished opportunities such as Outreach and Education Day to interact with the larger NIAMS community. Carter also talked about another painful leadership loss with the recent passing of Gahan Breithaupt, who was associate director of management and operations at NIAMS.
Despite these losses, Carter said that the NIAMS continues to push forward the missions of advancing research, creating training opportunities and disseminating research findings and health information. Carter explained that Coalition members play a critical role in helping the public and lawmakers understand the impact of NIAMS-supported research. He underscored the importance of partnerships to achieve NIH’s goal of turning discovery into health.
Carter discussed a number of ways that members and the NIAMS staff interact, such as Coalition engagement in NIAMS-sponsored scientific meetings and retreats, roundtable discussions, listening sessions, NIAMS Advisory Council meetings, webinars and social media events. He noted progress as indicated by new drug approvals from the U.S. Food and Drug Administration in the disease areas within the NIAMS portfolio, as well as the clear need for increased treatment options for patients. Over the last two years, several new drugs have come to market thanks in part to support from the NIAMS and NIH. The new entries include treatments for osteoporosis, muscular dystrophy and rare bone diseases, as well as treatment options that are known as JAK inhibitors and IL-23 inhibitors.
Carter discussed a unique collaborative model where researchers, the NIH, industry and non-profit partners combined skills and assets as a network to plan, prioritize and take the next research steps together. NIAMS and some Coalition organizations participate in the Accelerating Medicines Partnership (AMP), which focuses on rheumatoid arthritis and lupus research.Carter also discussed NIAMS’s role in the new $945 million National Institutes of Health (NIH) HEAL (Helping to End Addiction Long-termSM) Initiative. The NIAMS is overseeing a trans-agency effort related to the NIH HEAL InitiativeSM called the Back Pain Consortium (BACPAC) Research Program. This translational, patient-centered effort will address the need for effective and personalized therapies for chronic low back pain. The NIAMS distributed $150 million of funding through BACPAC this fall, marking the largest single expenditure in the Institute’s history.
Communicating Funding Opportunities
A major point of emphasis for Carter was the need to make NIAMS funding opportunities available to a wider audience. “This topic is relevant not only to scientists applying for grants but also to the advocates, patients and caregivers who are impacted by the conditions in our mission areas,” he said. He highlighted two researchers who received support through a combination of the NIAMS and Coalition organization funding and resources. Carter said support from non-governmental organizations can have an important role in shaping the career of a researcher, which can move the research field forward for the benefit of patients. Carter opened the floor to Coalition members to discuss effective methods for communication with key constituencies.
Several attendees noted a transition from relying on traditional newsletters to more focus on social media, electronic newsletters and websites. These avenues provide better real-time feedback about how many people see a message or watch a video online. Some members wondered if NIAMS could offer material for posting on social media or placing in electronic newsletters to make it easier to amplify key messages. In addition to a preference for concise messaging in an “easy-to-share” format, Coalition members expressed appreciation for existing opportunities for collaboration and interaction with both NIAMS and their own Coalition colleagues.
Amplifying the Patient Voice: Principles Meet Practice
Eleanor Perfetto, Ph.D., executive vice president of strategic initiatives for the National Health Council, spoke about “Patient Engagement Across the Health Ecosystem.” Researchers and health providers agree that patient involvement is important, but this does not always make it into practice. Perfetto highlighted the need to include patients at every stage of research, from protocol development to delivery of care. She described how meaningful patient engagement involves two-way relationships between patients and other stakeholders so that research questions and outcomes are truly patient centric. Great strides have been made to increase patient engagement in research and product development, she explained, but there is a long way to go to ensure that care delivery is aligned with the wants and needs of patients.
Coalition members gathered for breakout sessions in smaller groups covering: Systemic Rheumatic Diseases and Skin Diseases, Muscle Diseases and Bone Diseases, and Osteoarthritis and Orthopaedic Diseases and Disorders. NIAMS Extramural Division experts provided brief overviews of the different program areas funded under the NIAMS portfolio. The NIAMS presenters reminded audiences that the number of diseases is far greater than the number of researchers, thus highlighting the importance of collaborations. Coalition members shared information about their organizations and asked questions of NIAMS staff. Sessions ended with discussions of how Coalition members can get more involved with research efforts and the best ways for them to stay up to date on NIAMS funding mechanisms and share funding opportunities with their members.
The Unconference Session
Carol Torgan, SCOB, led meeting participants through an unconference session during the networking lunch. The unconference concept is a participant-driven session with an agenda developed by the people at the event. The format is based on observations that the most productive parts of formal meetings are often the informal conversations that take place during coffee breaks and in hallways. Session topics included:
- Social Media
- Patient Engagement
- Reaching Underserved Communities
- Funding Organizational Activities
- Applying for Research Funding
- Engaging Specific Populations – Ages/Genders
- Building Partnerships & Collaborations
Meeting participants engaged in lively discussions centered around each topic area throughout the session. These discussions provided an opportunity for participants to share knowledge with other attendees who have expertise across various areas within the Coalition. Representatives from each topic area shared key themes and ideas with the full group at the end of the session.
Approaches to Pain Management
Helene Langevin, M.D., director of the NIH’s National Center for Complementary and Integrative Health, spoke about chronic pain and the importance of studying both the body and brain when developing therapeutic strategies for pain management. Langevin noted that current strategies tend to separate mind and body. Health care providers often focus on “fixing the broken part” in the body that causes the pain. When pain persists after the broken part has healed, the patient is told the brain is responsible for any continuing pain. She suggested that this compartmentalized approach to pain management is not best for the patient. A whole-body approach that considers the body’s structural components (bone, muscles, etc.), underlying connective tissues and the mind is critical for developing therapeutic strategies for chronic pain management.
Afternoon Breakout Sessions
Engaging Underserved and Minority Audiences
Speakers from several organizations shared their insights on engaging audiences from underserved and minority populations. Marcela Gaitán, senior director for external relations at the National Alliance for Hispanic Health, pointed out that having Hispanic health workers and human services organizations at the center of outreach activities was the key to effectively reaching underserved communities. Starla Hairston Blanks, director of collaborative initiatives for the American College of Rheumatology, also emphasized the importance of utilizing healthcare workers from the community and added that informational materials should be culturally and linguistically relevant to the target audience. Wallace R. Henry, III, Ed.D., of VITFriends, discussed the importance of empowering patients through education and community. He noted that when those living with a condition come to the table, they want to be seen as individuals, not as patients or as their disease. Henry highlighted the importance of building patient communities, such as VITFriends, that bring patients together so that, if even for a moment, they can put their condition aside and come back to being themselves.
Clinical Trials: How to Educate Patients and Providers
Anna Fine, Pharm.D., deputy director of ClinicalTrials.gov, part of the NIH's National Library of Medicine, discussed the website ClinicalTrials.gov as a useful patient and provider resource. The site is the world's largest database of clinical trials with more than 300,000 entries at present. Improvements to the website, including more details on how to join a clinical trial, are expected in 2020.Matt Makara, of the Sjögren's Foundation, said his organization is working with clinical researchers to find improved ways to seek new treatments for the condition. The STEP, or Sjögren Training and Education Platform, aims to provide training to make sure there is consistent training among all those working on trials at various sites. The hope is that this will yield data that is easier to compare among different trial sites. Jennifer Gordon, Ph.D., Vasculitis Foundation, a researcher who was diagnosed with vasculitis, discussed her personal experience as medical experts raced to determine what was behind a series of health problems. After her diagnosis, she sought out a clinical trial to find better ways to get her immune system under control to combat vasculitis.
All of Us Update
Dara Richardson-Heron, M.D., chief engagement officer of the NIH’s All of Us program, said they have enrolled more than 200,000 volunteers to date and have more than 400 enrollment clinics across the nation. The program is aiming to sign up one million volunteers and hopes to recruit 75 percent from underrepresented groups. The All of Us Research Program plans to collect and study data over a long period of time. All of Us is designed to include patient participation, with patients represented at many levels of the program. Organizers hope that this effort will change the face of health care once all the data is made available to the scientific community.
Anna Hyde, Coalition co-chair, provided closing remarks, underscoring the amount of energy and enthusiasm felt in each of the sessions. Hyde highlighted themes, takeaways and potential action items from the meeting, expressing appreciation for each speaker and participant’s engagement and contributions. She encouraged participants to continue sharing knowledge and best practices, and to stay engaged with the Coalition via the Monthly Round Up and directly with the co-chairs.
Colleen Dundas, public liaison officer, SCOB, encouraged everyone to stay connected with the Institute throughout the year by visiting the NIAMS website, subscribing to our newsletters and following and engaging with the NIAMS on our social media channels. She closed by thanking the NIAMS staff and the Coalition’s Steering Committee and co-chairs for all their support in making the 2019 NIAMS Coalition Meeting a success.