The Lupus Initiative has several exciting projects underway to advance the goal of raising lupus awareness and eliminating the associated health disparities.
Projects funded by Centers for Disease Control (CDC):
Projects funded by Office of Minority Health (OMH)
American Indian/Alaska Indian Project (AI/AN)
The ACR is currently developing a program to educate non-rheumatology providers who serve American Indian/Alaska Native (AI/AN) communities about recognizing the signs and symptoms of lupus, the risks of lupus for those communities and making appropriate referrals to specialists. LEARN MORE
The Playbook Project
The Playbook Project is a localized grassroots lupus awareness campaign initiative that provides turnkey grassroots activities to student organizations at four-year colleges and universities.
The Playbook is a step by step implementation guide that provides student organizations with detailed activities to interact with, personalize and spread the key messages of the national lupus awareness campaign in their respective communities.
Promotora programs connect low-income, at-risk Latinos with health and social services, provide health education and empower clients with positive coping skills. The success of promotora programs stems from their cultural competency. Promotoras are trusted members of the community who reach out as peers to overcome language barriers and distrust of the medical system in the United States.
The ACR provides lupus education to promotoras (Latina community health workers). In addition to this education, we provide promotoras with lupus awareness materials to distribute to their clients. Contact us for more information.
National Awareness Campaign
The ACR and the Lupus Foundation of America (LFA) have partnered to create the “Be Fierce. Take Control.TM” national awareness campaign is designed to raise awareness of the signs and symptoms of lupus, and ultimately reduce the time to diagnosis by educating and empowering young African American and Latino women ages 18-25, who are most at risk for developing the disease.
The campaign uses social media, digital advertising, and influencer video content created by a company founded by Aston Kutcher – featuring the NY Sharks professional women’s football team and NY Sharks assistant coach, Collette Smith, who was recently named as the first African American female NFL coach and the second female NFL in history.
Medical Schools Outreach Project
Through the School Outreach Project, we offer complimentary lupus educational resources to medical and health professional schools in an effort to help increase the number of healthcare providers who are knowledgeable about diagnosing and treating lupus. These resources are also appropriate for teaching more general concepts such as health disparities, management of chronic disease, cultural competence and coordination of care.
If you are an educator at a medical or health profession school who is interested in reviewing our complimentary educational resources and considering them for use in your teachings, learn more here >
We developed an online self-management support tool to provide providers with resources that help people with lupus manage their disease outside of an office visit. Access resources here >
Rural Health Outreach Project
ACR’s Rural Health Outreach Project was developed based on our former Small Groups Projects design model. The project is designed to reduce health disparities and time to lupus diagnosis for impacted populations. We work to achieve this by educating providers and improving referral connections.
ACR’s Rural Health Outreach Project consists of virtual and live educational meetings held at rural Area Health Education Centers (AHECs) between rheumatologists and rural healthcare providers. The rheumatologist delivers a presentation on lupus followed by time for networking and relationship building. LEARN MORE
School Healthcare Provider Outreach Project
Recognizing a need for state action to raise awareness among healthcare providers of lupus signs and symptoms and what to do if lupus is suspected, we collaborated with the National Association of Chronic Disease Directors (NACDD) to implement the School Nurse Program.
This program allows nurses who work with students in grades K-12 to be trained by a rheumatology fellow and engage in critical conversations about how they can best help their students and their families if lupus is suspected. Additionally, a Lupus Care Plan and Pediatric to Adult Transition Plan are tangible tools that nurses receive and can utilize in their work. ACCESS RESOURCES HERE
Teaching Fellows in Lupus Project
Teaching Fellows in Lupus Project
Fellows in rheumatology are enlisted to deliver seminars on the diagnosis and treatment of lupus to non-rheumatology providers. The goal of this project is to change the behavior of non-rheumatology providers in connection with suspecting lupus and making appropriate referrals. It is also an opportunity to increase fellows’ knowledge and positive attitudes, as well as improve patient care and communication between providers.
Community Health Worker Lupus Clinical Trials Training (LuCTT)
In July 2018, ACR received $375,000 in funds from a two-year OMH grant to develop a program related to clinical trials that will focus on minority recruitment. Using a different approach from MIMICT, the Community Health Worker Lupus Clinical Trials Training (LuCTT) program will promote the recruitment and enrollment of minority populations affected by lupus into clinical trials by making use of community health workers (CHWs) as referral sources. The LuCTT program model will include multiple interconnected components that will be used by state, local and community organizations to host regional CHW training summits on lupus clinical trial recruitment support.
The ACR has partnered with Albert Einstein College of Medicine in Bronx, NY, and local CHW networks for the implementation of specific aspects of the LuCTT program. Irene Blanco, MD, Associate Professor of Medicine – Rheumatology and Associate Dean of Diversity Enhancement at Albert Einstein College of Medicine serves as LuCTT project lead, and she will provide the vital support necessary to ensure the cohesiveness in preparation and planning of content development, implementation, evaluation, dissemination and publication. ACCESS LUCTT RESOURCES
Lupus Engagement through Activity and Digital Resources (LEADR)
ACR will utilized $299,000 from a two-year grant-funded through the Office of Minority Health to implement an intervention to: (1) engage medical providers to discuss and refer a digital health coaching program with their patients; and (2) implement a digital health coaching program to increase physical activity among African American women and Latinas with lupus, reduce negative health outcomes associated with lupus, and ultimately reduce lupus health disparities. The study will run until Oct. 30, 2022 and plans to reach 200 Black and Latina women in Georgia.
The ACR has partnered with Pack Health, a health coaching company specializing in providing digital support to people with chronic conditions, to execute the programs. Pack Health will create curriculums and deliver one-on-one health coaching to the target populations. While the ACR will serve as the central organization for this project, all individuals and organizations working toward positive impacts for people with lupus will be welcomed, have a meaningful role, and have two-way communication within the network. We have established and will manage a Community Partnership Committee (CPC) as a primary organization body for this project that will infuse meaningful guidance, input, and decision-making throughout. The CPC will include the organizations such as Georgia Council on Lupus Education; Morehouse School of Medicine, Bethune Cookman University; Emory University, National Association of Chronic Disease Directors, as well as advisory committee members representing rheumatologist and non-rheumatology providers, people living with lupus, and other stakeholders.
Materials to Increase Minority Participation in Clinical Trials (MIMICT)
ACR will utilize $500,000 in funding from a two-year OMH grant to develop, evaluate and disseminate modifications of the ACR’s current model for the Materials to Increase Minority Involvement in Clinical Trials (MIMICT) program model developed in 2017 with OMH grant funding to increase minority participation in lupus clinical trials. The initial MIMICT program helped clinical trials sites and providers to work together to deliver accurate, trusted, and understandable information to people with lupus so that they can make informed decisions about participation in clinical trials. Over the next two years, the ACR will expand and modify MIMICT by broadening the pool of providers and patients to which it applies.
The ACR has partnered with two of its member-experts to apply their distinct experiences and resources for the benefit of MIMICT. Dr. Saira Z. Sheikh, MD, Assistant Professor, Rheumatology, Allergy & Immunology, University of North Carolina (UNC) at Chapel Hill and Allen Anandarajah, MD, MS, Associate Professor, Allergy, Immunology and Rheumatology, University of Rochester Medical Center. Dr. Sheikh will harness UNC’s collective expertise in developing clinical trials education programs for minorities to the benefit of MIMICT.
Training to Increase Minority Enrollment in Lupus Clinical Trials with CommunitY Engagement (TIMELY)
Training to Increase Minority Enrollment in Lupus Clinical Trials with CommunitY Engagement (TIMELY) is a two-year, $500,000 grant funded through the U.S. Department of Health and Human Services Office of Minority Health (OMH) that will run through September 2023. The program combines the ACR’s Materials to Increase Minority Involvement in Clinical Trials (MIMICT) model and its Community Health Worker Lupus Clinical Trials Training (LuCTT) model to operate collaboratively with practicing rheumatologists, nephrologists, and dermatologists, and community health workers serving African American and Hispanic patients. The combined intervention will address both provider- and patient-reported barriers to lupus clinical trial participation.
The program will be launched in Raleigh-Durham, NC and Rochester, NY, under the leadership of Dr. Saira Sheikh at the University of North Carolina at Chapel Hill and Dr. Allen Anandarajah at the University of Rochester Medical Center. Dr. Sheikh and Dr. Anandarajah have a track record of success, also leading the ACR’s MIMICT project that was funded by OMH.
For more information about the project access the Materials to Increase Minority Involvement in Clinical Trials (MIMICT) and Community Health Worker Lupus Clinical Trials Training (LuCTT) website or contact COIN staff, Tenesha Hood at email@example.com.