How the PALS Program Empowers Patients with Lupus, with Stacie Bell, Ph.D.

The Patient Advocates for Lupus Studies (PALS) program, initiated by Lupus Therapeutics, focuses on providing peer-to-peer education and support to individuals considering or participating in lupus clinical trials. The program has two primary components: early education about clinical trials, including key concepts like informed consent and trial procedures, and a trial-specific “buddy” system where PALS partners with participants throughout the trial process.

PALS are individuals living with lupus who have undergone clinical trials themselves, offering a unique perspective and emotional connection to participants. They receive extensive training on clinical trial protocols, lupus treatment advances (including emerging therapies like cell therapies) and effective patient-provider communication. PALS are also equipped with curated resources developed in collaboration with lupus experts from the Lupus Clinical Investigators Network (LuCIN).

In an interview with The Educated Patient, Stacie Bell, Ph.D., the executive vice president of Lupus Therapeutics, the clinical research affiliate of the Lupus Research Alliance (LRA), explains that the program emphasizes diversity, recognizing that lupus disproportionately affects women and women of color, and strives to ensure clinical trials reflect the diverse experiences of the lupus community. By connecting patients with relatable advocates, PALS not only offers support but also helps increase representation in research.

Bell explains that clinical trials can offer lupus patients greater care and access to treatments, especially for those who haven’t responded to traditional options, while also advancing research for the whole community.

In addition to the PALS program, the team at Lupus Therapeutics offers extensive educational resources for patients and providers to facilitate informed decision-making about clinical trials. Future plans include expanding the PALS program with a navigation center for easier access and increasing its integration with innovative clinical research initiatives across North America. The ultimate goal is to improve treatment options, equity and outcomes for all individuals affected by lupus.