VIRTUAL—Although lupus is one of the most common causes of morbidity and death in patients of color, these individuals are not adequately represented in most clinical trials studying the disease.1,2 With this fact in mind, a session of the 2023 ACR Diversification of Clinical Trials Summit, which took place in July, focused on Engaging Diverse Participants in Lupus Clinical Trials.
The Patient Advocate Perspective
The first speaker was patient advocate Stacey Kennedy-Conner, family and community engagement specialist, lupus representative and member of Patient Advocates for Lupus (PAL) Studies at Lupus Therapeutics, Chicago Public Schools. Mrs. Kennedy-Conner discussed several barriers that prevent patients from engaging in clinical trials, such as fear of being a guinea pig, not understanding the underlying lupus diagnosis and not having a trusted partner in the medical sector. She also addressed the history of ethical abuses in clinical trials and research.
Mrs. Kennedy-Conner listed the reasons she chooses to participate in clinical trials, such as the desire:
- To advance treatments;
- To help better represent patients of color and other minority groups in the scientific literature; and
- To help find a cure for lupus.
One program that seeks to increase minority participation in clinical trials is the PAL program. This initiative pairs adults with lupus who are interested in learning about clinical trials with a PAL peer—someone who has lupus, has been in a clinical study and has been trained by the PAL program to provide education. Mrs. Kennedy-Conner noted that such initiatives are instrumental in addressing misconceptions and increasing awareness about the importance of lupus clinical trials.
Aleta McLean, LPC, senior director of client services and outcomes tracking, Open Hand, Atlanta, shared the story of her own lupus diagnosis, which was delayed and led to a great deal of pain and suffering while she waited for treatment. Thus, she encourages patients with lupus to participate in clinical trials to help develop methods that lead to quicker, more accurate diagnosis and fewer medication side effects.
Mrs. McLean also noted the fear of the unknown and the potential for misinformation about medical research may dissuade many from participating in clinical trials.
She and other speakers noted that clinicians should broach the topic of clinical trial participation as a general concept in an appointmen early in the relationship, and work on building rapport over time. Additionally, clinicians and researchers should discuss if clinical trial participation will take time away from the patient’s work and family.