The Lupus Research Institute (LRI) is proud to launch the Lupus Education Advancement Project (LEAP) to reduce healthcare and racial disparities among minority and rural populations through education, increased awareness, and improved communication among healthcare providers, patients and the general public. LEAP is funded by a grant of $500,000 from the U.S. Department of Health and Human Services Office of Minority Health.
LEAP expands on the successful Teaching Fellows in Lupus Project piloted in 2014/2015 as a part of The Lupus Initiative®, a national program to reduce health disparities in patients with lupus by educating healthcare providers and medical students. Based on demonstrated success, LEAP continues to employ rheumatology fellows – specialists in training – to educate ‘frontline providers’ in primary and emergency care to recognize lupus and refer to a rheumatologist at the earliest stages of the disease. The new project goes a step further to overcome specific barriers to patient referrals within different types of healthcare networks. LEAP includes education in pediatric lupus, raises public awareness about lupus signs and symptoms, and leverages social media to foster better communication between patients and healthcare providers.
Addressing the Problems
Lupus can be easily overlooked or mistaken for other conditions and up until now, lupus knowledge among frontline providers was not well understood. By using data collected from over 620 participants in the Teaching Fellows in Lupus Project, LEAP will optimize the educational content delivered to the frontline providers to address specific knowledge gaps about lupus in the healthcare community. This will allow the project to better equip frontline providers with the knowledge they need most to accurately consider lupus.
Furthermore, while more and more people are turning to the internet and social media sites for lupus information and advice, it’s difficult to determine reliable sources. This is especially challenging in the Spanish speaking community, for which there is a lack of comparable lupus resources available. LEAP will leverage social media to disseminate answers to common lupus questions from experts, and create new, culturally driven resources in Spanish.
LEAP Takes Innovation to Next Level
In addition to educating healthcare providers to recognize the signs and symptoms of lupus, local rheumatologists participating in LEAP will also create clear guidelines and channels to help community and other providers in their network refer patients for lupus assessment and diagnosis quickly and efficiently, and incorporate measureable outcomes to assess impact within those healthcare systems.
“One of the things we learned in the Fellows Project was that in some cases, providers in our community didn’t know that a local rheumatologist was available or what specific health information should be collected when considering a diagnosis of lupus. By focusing on educating providers within healthcare networks, we can begin to close some of the common system gaps that create additional barriers to early diagnosis,” said project lead Dr. Amanda M. Sammut, Chief of Rheumatology, Harlem Hospital Center.
LEAP will also leverage Facebook to improve communication between healthcare providers and patients. The addition of this program element is based on data showing that lupus is one of the most highly represented diseases on Facebook, and the success of several Facebook chats in engaging the online patient community.
The new program will be implemented at:
- Geisinger Health System, PA by Dr. Alfred Denio
- Montefiore Medical Center, NY by Dr. Irene Blanco
- Harlem Hospital Center, NY by Dr. Amanda Sammut
- University of California, Irvine, CA by Dr. Sheetal Desai
Public awareness and education activities will be led by the Hispanic Communications Network and local lupus agencies Lupus LA and the Lupus Foundation of Pennsylvania as well as the Lupus Research Institute.
“LEAP helps fulfill the original vision of the Lupus Initiative, to provide healthcare professionals nationwide with the tools to recognize, diagnose and treat lupus,” notes LRI President and CEO Margaret Dowd. “We look forward to this broader impact that can overcome challenges within individual healthcare systems so patients are diagnosed as early as possible. We are excited to support innovation in patient/provider communications to improve disease management.”