Trust key to improving Black patient representation in lupus trials
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Increasing clinical trial awareness and support among Black patients with lupus, with the cooperation of nurses, will require improving trust and strong relationships, noted a speaker at the 2023 ACR Clinical Trials Summit.
“We know that the adaptation of the Lupus Conversations Program is effective, but relationship-building with the nurse and the institution is critical to the success of the nurse popular opinion leader (POL) model,” Joy Buie, PhD, MSCR, RN, the director of research for the Lupus Foundation of America, said during the summit hosted by the American College of Rheumatology. “In addition, we have identified that a nurse-led intervention and patient follow-up are key to understanding the overall effectiveness of the educational program.”
Approximately 31% to 43% of patients with lupus are Black. However, Black patients account for just 14% of all lupus clinical trial patients. According to Buie, this underrepresentation can negatively impact the conclusions of studies investigating new therapies.
To increase diversity and representation in clinical trials, Buie and colleagues started the IMPACT+ program, which has three goals:
- Increase knowledge among nurses regarding clinical trials, including potential barriers faced by patients;
- Educate patients about participating in clinical trials; and
- Determine if using patient navigators to drive educational initiatives is feasible.
The program initially focused on sites with prominent populations of Black patients with lupus — Los Angeles, Houston, Miami, Philadelphia and New York City.
“We identified target populations to further disseminate information about clinical trials to,” Buie said. “As part of our program objectives, we sought to increase nurse knowledge and the application of the popular opinion-leader model to encourage Black and African American participation in lupus clinical trials.”
The researchers worked with nurses within the Rheumatology Nurses Society and adapted the Lupus Conversations program to increase understanding regarding lupus and the importance of participating in clinical trials.
“Our program proved to be effective,” Buie said.
Among RNS participants who attended the session outlining the program, 97% to 100% reported satisfaction with the goals, information and engagement. Additionally, 95% of participants reported an increase in understanding the needs of clinical trials and the barriers that limit participation among target groups, Buie said.
In the wake of the summit, the Lupus Foundation of America is working with RNS to make the training available to more nurses who care for patients with lupus.
In addition to providing nurse education and resources, it will be necessary to expand existing patient navigator programs, Buie said.
“The navigator’s time is really occupied with addressing basic care needs,” she added. “Additional resources are required to fund the expansion of patient navigator programs in health care settings in order to make sure that opportunities to further engage patients regarding clinical trials are there.”
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Buie J. Increasing minority participation and awareness in clinical trials. Presented at: 2023 Lupus Clinical Trials Summit (virtual). July 21, 2024.
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