PULSE

Partners United for Lupus Sustainable Education and Awareness (PULSE) is a national effort aimed at reducing the average time to diagnosis and improving the coordination of care and quality of life of people living with lupus, especially among populations that are disproportionately impacted by the disease. 

PULSE activities are organized around five overarching goals:

• Raise awareness about signs and symptoms of lupus
• Implement and evaluate lupus self-management tools and resources
• Promote use of self-management tools and resources
• Promote integration of self-management tools into electronic health records and/or medical information technology
• Address barriers to accessing self management tools and resources

Raise awareness about signs and symptoms

Lupus can affect anyone, but it most commonly strikes women between the ages of 15 and 44. In the United States, lupus disproportionately affects racial and ethnic minorities. With support from the CDC cooperative agreement, the LFA created the Be Fierce. Take Control.™ campaign as a part of the LFA’s ongoing commitment to increasing lupus awareness and reducing the time to diagnosis. 

The Be Fierce. Take Control.™ campaign is designed especially for young Black/African American and Hispanic/Latino women, who are at higher risk of developing lupus in their lifetime. This digitally led campaign uses postings, images and other creative content that resonates with this population on social media platforms. 

The campaign shares information about the signs and symptoms of lupus and encourages young women to listen to their bodies and take action, such as speaking to their health care provider. We also offer a toolkit for partners to help us spread the Be Fierce. Take Control.™ awareness messages to their audiences and partners.

Implement and evaluate self-management tools and resources

Disease self-management is a proven way to improve the health and quality of life for people with chronic diseases like lupus. 

• In January 2022, the LFA launched Strategies to Embrace Living with Lupus Fearlessly (SELF), a free online program to help people with lupus learn to better manage symptoms, stress, and medications and work with their health care team. 
• We developed Take Charge, a 12-week email series that offers information and strategies for living better with lupus around a variety of important topics. 
• We offer the National Resource Center on Lupus as well, a living collection of information and health education resources on understanding, treating, diagnosing, coping and living with lupus. 

Promote use of self-management tools and resources

The LFA relies on partners to effectively spread lupus self-management tools to people with lupus and higher risk populations. From LFA chapters and ambassadors, non-profit organizations, universities, faith-based organizations, medical facilities and professional organizations, the LFA works with over 90 National Lupus Partner Network Members to help spread the word about lupus self-management resources like the NRCL, Take Charge and SELF. 

We work very closely with partners best positioned to reach audiences through social media channels, newsletters, and in-person and virtual events. These trusted sources provide the best opportunity to reach audiences who need self-management resources the most, while also educating them about the tools available and how best to incorporate them into their lives to most effectively manage their lupus. 

We also convene select partners to provide feedback, input and guidance on our self-management programs to ensure that they are culturally relevant and linguistically appropriate. 

Promote integration of self-management tools into medical information technology

Integrating self-management tools into medical information technology holds the promise of increased access to health education and better coordination of care for people with lupus. With support from the PULSE grant, the LFA is developing the SELF program into an app and exploring ways to use medical information technology to increase the use of self-management tools and improve communication with health care providers.

Address barriers to accessing self-management tools and resources

Our goal is to leverage our partnerships and collaborations in order to decrease barriers to access self-management tools and services and to address social determinants of health that impede access to care. The LFA works to identify barriers to accessing self-management tools and services, as well as identify gaps in representation of our partner network including LFA ambassadors. We also strive to connect people with lupus with service providers that address barriers, such as lack of access to safe housing, transportation, and neighborhoods–as well as economic stability, language and health literacy skills. 

If you are interested in learning more or partnering with the LFA on the PULSE project, please contact:

Melicent R. Miller, DrPH, MSPH
PULSE Project Director
Miller@lupus.org 

The Partners United for Lupus Sustainable Education and Awareness (PULSE) Project is supported, in part, by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services under cooperative agreement #NU58DP006907. Funds received are used to support campaigns, initiatives and resources developed in support of the PULSE Project. From 2020 to 2023, funds totaling $4,413,223 have been used to support activities under the PULSE Project.