The ACR’s Collaborative Initiatives Promote Awareness of Lupus, Rheumatic Diseases

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When I began my tenure as ACR president this past November, I posited that it “takes a village” to grow and succeed in rheumatology’s rapidly changing environment. The ACR village includes volunteers who represent a diverse leadership pipeline reflecting the demographics of our younger members. It also includes the international rheumatology community that accounts for over 50% of the attendance at our Annual Meeting. The ACR’s Lupus Initiative serves as a vivid example of how we have expanded our village.

The Lupus Initiative (TLI) began in 2009 when the ACR was awarded a one-year cooperative agreement with the U.S. Department of Health and Human Services, Office of Minority Health to develop provider-focused education resources aimed at reducing health disparities in lupus. Almost seven years later it has evolved into a multifaceted lupus program that receives funding from multiple sources and includes development and dissemination of education resources for providers, students and patients, and the pilot testing of education programs to increase frontline provider knowledge about lupus. In October 2015, TLI was propelled into the national spotlight after the ACR received a grant from the Centers for Disease Control and Prevention (CDC) to create and implement a national lupus public awareness and education campaign to build sustainable lupus awareness, knowledge, skills and partnerships. The ACR’s CDC project has three components: 1) dissemination of immediately available lupus education resources, 2) development of a national lupus awareness media campaign and 3) grassroots, community-tailored, local activities.

To support the CDC project, the ACR is utilizing its existing village of local rheumatology societies. Just months into the project, the ACR has already exceeded its 2016 dissemination goals. Twenty-five state rheumatology societies have committed to help the ACR disseminate lupus information to providers and patients. Eight societies have already distributed lupus education resources to its constituents. Additional partnerships include:

1. The ACR is collaborating with the Lupus Foundation of America to develop a national lupus awareness campaign. The organizations are working together to build an impactful public campaign platform that will launch during Lupus Awareness month (May) 2017.
2. From July–September 2016, the ACR will partner with three rheumatology fellowship programs and ARHP member Amy Caron, MPH, to implement the ACR’s Fellows Project in their communities. Each training program will appoint two rheumatology fellows from its institution to lead lupus education sessions for frontline healthcare providers. The Fellows Project will be led by Emilio Gonzalez, MD, at University of Texas Medical Center in Galveston, Robert Quinet, MD, at Ocshner Medical Center in New Orleans, and Karen Costenbader, MD, and Candace Feldman, MD, at Harvard University in Boston.
3. The ACR is partnering with Día de la Mujer Latina to increase lupus knowledge among community health workers in the Latino community, called promotoras. Promotoras are trained to guide vulnerable populations to access healthcare and manage their disease. This year, the ACR will host lupus education sessions for promotoras in Houston, San Diego and Atlanta.
4. With the help of Rosalind Ramsey-Goldman, MD, the ACR has partnered with Northwestern University and the Illinois Public Health Association to enlist popular opinion leaders to promote lupus awareness, education and behavior change within African American communities in the Chicago area.
5. The ACR is working with the National Area Health Education Center (AHEC) Organization to host small group sessions for frontline healthcare providers who serve predominately rural, African American, Latino and American Indian/Alaska Native populations. During these sessions, providers will learn about lupus and meet local or geographically accessible rheumatologists to whom they can refer patients or with whom they can consult on cases.

Other ACR members who have been integral to efforts to promote lupus awareness include: Stacy Ardoin, MD, Childhood Arthritis and Rheumatology Research Alliance; Maria Dall’Era, MD, University of California San Francisco; Elizabeth Ferucci, MD, Alaska Native Tribal Health Consortium; Peter Izmirly, MD, New York University; Emily Somers, MD, ScM, University of Michigan; and Jinoos Yazdany, MD, MPH, University of California San Francisco.

The Lupus Initiative has been so successful that the ACR has established a Collaborative Initiatives department. As the name suggests, the department’s target stakeholders include a broad circle of collaborators and partners, including ACR and ARHP members in private practice and academia, as well as private, public and not-for-profit entities. The department uses lupus and other rheumatic diseases as case studies to advance health equity, eliminate health disparities and improve the quality of patient lives.

The Lupus Initiative has been so successful that the ACR has established a Collaborative Initiatives department. … The department uses lupus & other rheumatic diseases as case studies to advance health equity, eliminate health disparities & improve the quality of patient lives.

Recently, ACR leadership established a working group of ACR and ARHP members to guide the strategic direction of the Collaborative Initiatives department. The inaugural volunteer members are Greg Dennis, MD, Candace Feldman, MD, MPH, David Karp, MD, PhD (ACR Board liaison), Bernardo A. Pons-Estel, MD (international member), Jillian A. Rose, LMSW (ARHP member), and S. Sam Lim, MD, MPH (chair). Over the next several months, the working group will identify relevant funding and commercialization opportunities, provide guidance on expanding the reach of the current projects, and ensure alignment of activities with the ACR mission, vision and core values, as well as ensuring the continued vitality of The Lupus Initiative.

I welcome your feedback and suggestions to continue to expand the ACR village, raise awareness about lupus, and decrease health disparities for our patients with rheumatic diseases.

Provider, patient, educator and student resources are available at thelupusinitiative.org.

Joan M. Von Feldt, MD, MSEd, FACR, FACP, is president of the ACR and a professor of medicine at the Perelman School of Medicine at the University of Pennsylvania. She is also staff physician at the Philadelphia VA Medical Center.