Interviewing Black Adults with Systemic Lupus Erythematosus to Improve Engagement and Inclusion in Lupus Research

Lack of representation in clinical research is a major concern due to the considerable racial inequities in systemic lupus erythematosus (SLE). A recent study aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research through interviews where participants offered their perspectives. Interviewees expressed a desire for more transparency and communication from researchers, and highlighted research areas that would improve their quality of life, including behavioral treatments, opioid alternatives, and a focus on mental health. 

Researchers interviewed 30 Black adults (29 female; 1 male) with SLE to describe factors that impacted their research perceptions. Researchers identified five themes that describe opportunities to improve engagement and inclusion, including: 

1. Ethical and equitable research 
   • Study participants shared how historical abuse and injustice influenced their views on research. 
   • They emphasized the importance of racial representation and research equity. 
2. Trusting researchers to conduct studies and translate findings to health care 
   • There was emphasis placed on trusting the intentions of researchers, knowing how their data will be handled, and the importance of receiving updates on research outcomes and how it will improve SLE care. 
3. Potential benefits of participating in drug trials 
   • Participants voiced that they weigh the benefits and risks of drug trials, especially with blinded trials, where they don’t know if they are receiving the treatment or the placebo, and experimental drug trials. 
4. Altruism 
   • Participants noted they were interested in research because of the potential to improve SLE prevention, treatment, and make advancements to help others. 
5. Research priorities 
   • Areas of interest for further research were identified, including research that explains the cause of lupus, better diagnostic testing, more mental health research (due to the severity of symptoms and uncertainty associated with SLE), lifestyle factors that affect lupus (nutrition, diet, exercise, etc.), and alternatives to pain medications and glucocorticoids due to their side effects. 

Learn more about trust and participation in research and Increasing Minority Participation and Awareness in Clinical Trials (IMPACT) for lupus.

Read the study