Collage of participant photos

Participants at the 2021 Outreach and Education Meeting

Welcome and Announcements

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) held its eighth biennial Coalition Outreach and Education Meeting: Creating Connections for Science on October 27, 2021, as a virtual event due to the ongoing COVID-19 pandemic. The NIAMS Coalition is an independent group of more than 90 professional and voluntary organizations interested in the mission and research areas of the NIAMS. Seventy-five representatives from 44 Coalition organizations logged on for the meeting.

Coalition Overview

NIAMS Coalition co-chairs Anna Hyde, M.A., vice president of advocacy for the Arthritis Foundation, and Eryn Marchiolo, M.P.H., vice president of mission at the Rheumatology Research Foundation, presented a brief history of the NIAMS Coalition, which was established more than 20 years ago. They noted the Coalition’s role in advocating for the NIAMS, and the compelling mutual goal of serving patients and professionals. They highlighted key Coalition activities, including two activities newly established in 2021: the Coalition Rare Disease Working Group and the Coalition Resources Survey.

The State of the Institute

In her first state of the institute address to the Coalition, NIAMS Director Lindsey Criswell, M.D., M.P.H., D.Sc., focused on three areas: a summary of her professional background; an introduction to the NIH and the NIH/NIAMS budget; and an overview of key NIAMS and NIH activities.

Criswell reflected on how pivotal NIAMS support has been for her throughout her career. For example, her first grant was a development and feasibility study supported by a NIAMS centers grant, and her first R01 was from the NIAMS. Criswell also described how community engagement and the patient voice have been crucial to the success of her research, which has primarily focused on rheumatoid arthritis, systemic lupus erythematosus and Sjögren's disease. Since assuming her new role as director in February 2021, Criswell has been familiarizing herself with the broad portfolio of diseases and conditions within the NIAMS mission.

Criswell shared some of her near-term goals as NIAMS director. She has been actively getting to know her fellow Institute and Center directors and exploring ways that NIAMS can establish partnerships and leverage opportunities of common interest. With regards to the budget, she noted that the federal government’s fiscal year 2022 began on October 1 and that Congress had not yet reached an agreement on the final numbers. At the time of this writing, NIAMS is operating under a continuing resolution.

The bulk of Criswell’s address focused on current NIH and NIAMS activities, including the proposed Advanced Research Projects Agency for Health, or ARPA-H. She recognized the efforts of the American College of Rheumatology, the American Society for Bone and Mineral Research and the Society for Investigative Dermatology, all of whom helped to ensure that the NIAMS research community’s interests were represented in a series of ARPA-H listening sessions during the summer of 2021.

Criswell described the Helping to End Addiction Long-termSM Initiative, or NIH HEAL InitiativeSM, an aggressive, trans-agency effort to speed scientific solutions that could stem the national opioid public health crisis. One of the ways NIAMS is contributing to this initiative is by leading the Back Pain Consortium Research Program, or BACPAC. In addition, Criswell described NIAMS activities supporting an NIH-wide effort to end structural racism, which includes the NIAMS Diversity Supplement Scholars Program.

Criswell spoke broadly about the NIH Accelerating Medicines Partnership® (AMP®) program. She explained that NIAMS is currently involved in three AMP programs: AMP Rheumatoid Arthritis/Systemic Lupus Erythematosus (AMP RA/SLE), AMP Autoimmune and Immune-Mediated Diseases (AMP AIM), which is the next phase of AMP RA/SLE, and AMP Bespoke Gene Therapy Consortium (AMP BGTC).

In closing, Criswell invited interested Coalition members to subscribe to the new monthly NIAMS Funding News and periodic NIAMS Funding Alerts by email, and follow the NIAMS Funding Twitter account. In addition, NIAMS developed a series of six publications describing the various sections of the 2020-2024 Strategic Plan. The handouts are designed to be printed on 8.5x11 or legal-sized paper, so members can take hard copies with them as go out and talk about the work that NIAMS is doing. (The Institute recently published a “What is NIAMS?” overview document that is available for download.)

NIH Initiatives to Reduce COVID-19 Health Disparities and Address Structural Racism

Monica Webb Hooper, Ph.D., deputy director of the National Institute on Minority Health and Health Disparities (NIMHD), explained that equity issues are important to consider early on in the research process, or during a public health crisis like the COVID-19 pandemic. Webb Hooper noted poverty tends to be concentrated among populations that have access to fewer health care resources, making these populations more vulnerable to medical problems.

The COVID-19 pandemic collided with pre-existing inequities for underserved populations. Issues such as structural racism and skewed distribution of pharmacies and hospitals were magnified in their impact as communities struggled to deal with COVID-19. NIH launched the Rapid Acceleration of Diagnostics – Underserved Populations (RADx—UP) to seek ways to offer better at-home and point-of-care testing options for COVID-19.

Distrust of the medical establishment and misinformation that is shared within the community can complicate efforts to control the spread of COVID-19. The Community Engagement Alliance (CEAL) Against COVID-19 Disparities, which NIMHD is co-leading, is also working to identify and address issues of mistrust about vaccines against COVID-19 and the flu, and find ways to increase the uptake of these vaccines among underserved populations. Finally, Webb Hooper described the NIH UNITE Initiative, which was established to identify and address structural racism within the scientific community.

Breakout Sessions

Raising Awareness Through Education and Motivation

Elena Rios, M.D., M.S.P.H., president and CEO of the National Hispanic Medical Association, outlined COVID-19-related challenges for Latinos and Hispanics in the United States. The organization launched the Vaccinate For All campaign to overcome vaccine hesitancy, reduce barriers to access, and provide accurate information to Hispanic and Latino communities.

Khaleelah Cohen, M.A., special projects consultant for the Foundation for Sarcoidosis Research, presented a talk titled, “African American Women & Sarcoidosis: Engaging Underserved Populations.” The organization launched an awareness campaign and is collaborating with a wide range of stakeholders, including patients, clinicians, researchers, advocacy organizations, and hospitals/clinics. The group is customizing the messaging and communication channels for each audience.

Outreach and Education – Promoting Self-Advocacy Within Communities

Zsanai Epps, M.P.H., C.H.E.S., special projects manager of Black Women’s Health Imperative, spoke about the efforts of her organization to empower black women to be advocates and leaders for health and well-being. The organization has several programs focusing on education, training, advocacy, and self-advocacy; to amplify voices of black women; and to encourage engagement so that they can pursue gender and racial justice.

Chrissy M. Thornton, M.B.A., executive director of The Myositis Association, reported that looking at health disparity requires examining how racial, ethnic, religious, and other marginalized groups are disproportionately being affected by preventable disease, death, and disability. The goal is to achieve health equity through giving everyone what they need and removing barriers. The goal is not to pay more attention to one group over another, a common misconception when speaking about equity.

Research and Clinical Trials Mechanisms for Inclusion and Representation

Mary Stober Murray, M.P.H., vice president of the Collaborative Action Networks National Minority Quality Forum, said that patient-centered research is vital and involves striving to properly represent a diversifying population. Leveraging technology and data, engaging patients and communities, and involving stakeholders (including physicians, research teams and industry experts) are the building blocks to creating the next generation of drug development.

Karl Lewis, Ph.D., Orthopaedic Research Society, discussed his organization’s efforts to more broadly represent diversity within its ranks. The group has been assessing the current state of its diversity, including a membership climate survey, which will help determine strategies to increase the number of women members, as well as members from underserved population groups.

Research and Data Partnerships: Building a More Inclusive Research Enterprise

Kristin Schneeman, director of the Milken Institute’s FasterCures program, presented a talk called “Research and Data Partnerships: Building a More Inclusive Research Enterprise.” The organization aims to increase the speed of treatment development across a variety of conditions.

Schneeman described how FasterCures seeks ways for patient groups to work with shared data networks that will support research relevant to their respective patient communities. Schneeman explained this is a timely discussion as researchers and regulators are increasingly interested in how to better involve patients in the treatment development process. Treating patients as key partners and involving them early in the research process can lead to meaningful engagement, she said. Patient organizations can serve as vital partners to help as sources of patient-generated health data. She cited the Michael J. Fox Foundation as a key early partner in the development of a new treatment for Parkinson’s disease.

Interactive Plenary Session: Collaborative Responses to COVID-19 and Best Practices on Patient and Provider Engagement in COVID-19 Research

Jinoos Yazdany, M.D., M.P.H., vice-chair of the COVID-19 Global Rheumatology Alliance, discussed patient and health care provider engagement in COVID-19 research. She noted that social media allowed rheumatology researchers around the globe to quickly come together to begin looking at the  impact of COVID-19 on their patients. The group was able to set up a database that gathered 20 cases in  its first 24 hours in March 2020. As of October 2021, the registry had recorded more than 20,000 cases, which allowed experts to determine which rheumatology treatments might affect patients who had received COVID-19 vaccinations. The group offered grants that allowed colleagues in Africa to participate. Yazdany said this type of technology-driven alliance could help rheumatologists respond to future health crises.

NIH’s Helping to End Addiction Long-term Initiative (HEAL)

Rebecca Baker, Ph.D., director of the NIH’s HEAL Initiative, outlined the objectives and the progress of the initiative to address the needs of millions of people who experience chronic pain. The HEAL Initiative, which was established in 2017, seeks to understand the biological underpinnings of different kinds of pain, determine how pain becomes chronic, discover biomarkers and pathways, and develop non-addictive pain management treatments.

HEAL funds different clinical research programs focused on specific pain conditions, including chronic low back pain. NIAMS leads the HEAL program to study back pain, known as the Back Pain Consortium (BACPAC) Research Program. BACPAC is a patient-centric translational research initiative that aims to better understand back pain and develop new therapeutic options that are individually tailored to patients. Baker also highlighted the HEAL Community Partner Committee, which is comprised of patients, advocates, liaisons, and family members. The Committee provides input on how the HEAL Initiative engages stakeholders and communities, increases participant diversity and inclusion in research, and addresses patient concerns.

Closing Remarks

Eryn Marchiolo, Coalition co-chair, and Colleen Dundas, M.P.H., NIAMS public liaison officer, provided closing remarks, expressing appreciation for everyone’s engagement and contributions. Marchiolo asked 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. Dundas encouraged Coalition members to stay connected with the Institute throughout the year by visiting the NIAMS website, subscribing to NIAMS e-newsletters and following and engaging with the NIAMS on social media channels. They closed by thanking Coalition membership and NIAMS staff for supporting a successful 2021 NIAMS Coalition Outreach and Education Meeting.