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National Minority Quality Forum And Biogen Release a Report Highlighting a Model to Improve Clinical Trial Diversity

Partnership works to improve outcomes for Black and Hispanic women living with lupus.

Washington, D.C (May 20, 2024) — The National Minority Quality Forum and Biogen released a report, Improving Diversity in Clinical Trials, for National Lupus Awareness Month (May) detailing their efforts to increase awareness of the need for clinical trial diversity in lupus.

There are significant disparities in lupus, with Black and Hispanic women being 2-3x more likely to be diagnosed with lupus than non-Hispanic, white women. Additionally, Black and Hispanic women are more often diagnosed at a younger age and experience more severe disease and worse outcomes. 

Despite being most affected by lupus, Black and Hispanic women are not well represented in clinical trials, making it difficult to confirm that treatments are safe and effective for them. Historical distrust of the health care system, lack of knowledge and awareness and difficulty finding and qualifying for clinical trials are all contributing factors for people of color not participating. Additionally, internal biases and lack of awareness about clinical trials from providers are barriers to participation.

NMQF and Biogen partnered to establish a Clinical Trial Learning Community (CTLC) model to address these challenges in Black and Hispanic lupus patients living in the Washington, DC, Maryland and Virginia (DMV) areas. The CTLC develops recommendations, guidelines, and metrics that meet the following priorities: 

1. Improve the engagement and inclusion of underrepresented communities in clinical research by influencing infrastructure development and outreach strategies.
2. Improve access to clinical trials education by influencing targeting strategies, site infrastructure development and sponsor and community readiness efforts.
3. Improve community support of lupus patients by providing resources to inform and encourage them about pursuing clinical research as an early option for care. 

“NMQF uses data, education and community engagement to reduce patient risk in minoritized communities. This is particularly important in lupus, where new and effective treatments are needed,” says Kelelaye Emiru, Vice President, Center for Health Information Systems and Services, National Minority Quality Forum. “We wanted to establish a comprehensive model that would affect real change and drive improved outcomes for Black and Brown women with lupus.” 

The CTLC model used a multi-pronged approach to provide information and resource about lupus and clinical trial diversity:

• Examined data using the NMQF Clinical Trials Index to understand where the model could be effective
• Established an advisory board of healthcare leaders, patients, community leaders and advocates
• Provided quality improvement training for clinicians and health systems
• Worked with a network of community leaders, specifically faith leaders and barbers/stylists, to share information and resources through in person events
• Provided education directly to patients and other women at risk for developing lupus through digital channels

Using this model, NMQF and Biogen were able to provide quality improvement training to over 150 clinicians, engage over 800 people directly through community outreach activities and share information about lupus and clinical trials digitally to over 1.2 million Black and Hispanic women ages 18-44, the age group most commonly diagnosed. 

“Biogen is proud of the success this partnership with NMQF has brought forth to improve lupus care and reduce inequities for Black and Hispanic women with lupus,” said Kate Wilson, Head of Clinical Trial Diversity at Biogen. “We look forward to the continued success of this CTLC model and have already begun implementing it to address disparities in Alzheimer’s care. We are optimistic that using this model, we can increase clinical trial diversity and ultimately improve health outcomes across a myriad of diseases.”

Read the entire report here: https://nmqf.org/resource-library/improving-diversity-in-clinical-trials/

About National Minority Quality Forum
The National Minority Quality Forum (NMQF) is a 501(c)(3) not-for-profit research and advocacy organization based in Washington, DC. The mission of NMQF is to reduce patient risk by assuring optimal care for all. NMQF’s vision is an American health services research, delivery and financing system whose operating principle is to reduce patient risk for amenable morbidity and mortality while improving quality of life. For more information, please visit www.nmqf.org.

About Biogen
Founded in 1978, Biogen is a leading biotechnology company that pioneers innovative science to deliver new medicines to transform patients’ lives and to create value for shareholders and our communities. We apply deep understanding of human biology and leverage different modalities to advance first-in-class treatments or therapies that deliver superior outcomes. Our approach is to take bold risks, balanced with return on investment to deliver long-term growth.

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