Community-Based Health Equity Initiatives
Lupus impacts people of color two to three times as often as white people, and often with greater severity of disease; yet Black individuals account for just 14% of clinical trial participants. Because lupus affects each person differently, it is important to reflect this full range of diversity in clinical trials to ensure that everyone in the lupus community has access to the best therapies for their individual needs.
We’re tackling this disparity head-on through Project CHANGE (Community-based Health Action Network to Generate trial participation and Eliminate disparities), our groundbreaking approach to ensuring that any new treatments are developed, tested, and ultimately used by the communities who need them most.
Centering Diversity, Equity, and Inclusivity in Clinical Research
Project CHANGE provides people of color, particularly Black people, with the education and tools they need to be well represented in lupus clinical research, make empowered decisions about research, and receive the best possible support and care when they do choose to participate.
We’re bringing together cross-sector stakeholders – from healthcare providers, advocacy groups, and community-based health organizations to local community leaders — to co-create solutions to undoing the barriers contributing to this detrimental lack of diversity in lupus clinical research.
Led by a multi-disciplinary, diverse Steering Committee, the three-year program is being implemented in the following major stages from formation through evaluation and reporting.
PARTNER WITH LOCAL COMMUNITIES
Project CHANGE Steering Committee leveraged a rigorous selection methodology to select three pilot sites to serve as a Lupus Research Collaborative (LRC), working with diverse community stakeholders to tailor action plans for each community’s specific needs.
IMPLEMENT ACTION PLANS
Lupus Therapeutics, along with the Steering Committee, provides extensive support and mentorship to each of the three chosen LRCs – Atlanta (Emory University), Nashville (Vanderbilt University) and Philadelphia (University of Pennsylvania)- to implement their individual action plans that address their community’s specific and unique barriers to raising awareness and accessing lupus clinical trials among Black people with lupus.
EVALUATE EACH PROGRAM
In partnership with research and evaluation experts at KDH Research and Communication and Decision Information Resources, Inc., Project CHANGE tracks and evaluates outcomes, challenges, and successes of each LRC so this process can be replicated in other communities in the future.