October 1, 2023
Call for Individuals to Serve as a Trained Peer Educator
Lupus Therapeutics, the clinical affiliate of Lupus Research Alliance, is pleased to announce the expansion of the highly successful Patient Advocates for Lupus Studies (PALS) pilot program with an exciting request for people who have clinical trial experience as well as a lupus diagnosis to apply to become a trained PAL.
PALS is a peer-to-peer clinical trial early education program co-designed with individuals with lupus to improve clinical trial awareness, knowledge, and enrollment, with the goal of increasing diverse representation in lupus clinical trials. Many trials struggle to recruit enough participants and often do not represent the diverse groups most affected by lupus,1,2 which can lead to results that do not accurately reflect the effect of potential therapies among all patients. 1,3
Piloted at five medical centers, the PALS program trained 10 individuals living with lupus who had participated in clinical research to serve as peer educators to those who had never been in a trial. Data presented at the 2022 American College of Rheumatology annual meeting showed that the PALS program effectively met the outlined objectives to increase knowledge, perception, and intentions to participate in clinical trials among the 64 people with lupus who were matched with a PAL.
Based on this success and the continued need to increase diverse representation in lupus research, Lupus Therapeutics is expanding PALS as a nationwide program. In addition to the existing PALS, 10-15 qualified individuals will be enlisted and trained to serve as PALs who can provide people with lupus the tools needed to make an informed decision about joining a clinical trial. In addition, PALs may serve as a trial buddy for individuals while enrolled in studies and provide them with further support for new areas of research such as biospecimen registries or cell therapy.
“We welcome individuals living with lupus who have clinical trial experience to submit an application for the expansion of this amazing program,” commented Lupus Therapeutics Executive Vice President Stacie Bell, PhD. “The ability to speak with a peer regarding his/her/their personal experience with clinical trials provides a person considering a trial with a firsthand account of what participation is really like. And they have an additional opportunity to ask questions regarding clinical trial participation, some of which only someone who’s been through it can answer. Peer-to-peer support is critical to broadening diversity in and access to clinical trials.”
All PALs must be living with lupus and have personal experience with a clinical trial and patient advocacy. The PAL must be willing and able to undergo training and comprehend basic medical terminology related to lupus and clinical trials. Additional skills needed include the ability to:
- Connect with individuals from diverse backgrounds and treat individuals from all backgrounds with respect and integrity.
- Respect that everyone has their own unique lupus experience and differing priorities regarding treatment.
- Listen patiently, considering different levels of knowledge and comprehension around clinical research.
- Provide general information about clinical trials while avoiding recommending any one trial or offering medical advice.
Applications to become a PALS representative closed on October 27, 2023. Those accepted to the program will have the option to volunteer or receive compensation for their time. The community will be alerted when adults with lupus who are interested in learning more about clinical trials can request to be matched with a PAL.
- The Society for Women’s Health Research. (2011). Dialogues on Diversifying Clinical Trials:Successful Strategies for Engaging Women and Minorities in Clinical Trials.September 22-23, 2011.
- Mitka, M. (2011). Treatment for lupus, first in 50 years, offers modest benefits, hope to patients. JAMA, 305(17), 1754-1755.
- Dirks N. L., et al. Pharmacokinetics of immunosuppressants: a perspective on ethnic differences. Int J Clin Pharacol Ther. 2004 Dec; 42(12):701‐18