The Patient Advocates for Lupus Studies (PALS) Program was created by the Lupus Research Alliance (LRA) through its clinical affiliate organization, Lupus Therapeutics (LT), to improve clinical trial awareness, knowledge, and enrollment among people living with lupus, with a specific focus on reaching diverse populations. As part of the program, individuals living with lupus who have personal experience with clinical research receive training to serve as peer advocates, or PALs, for patients at participating Lupus Clinical Investigators Network (LuCIN) centers. PALs act as an additional, trial agnostic resource for individuals with lupus who are considering enrolling in or want to learn more about clinical trials. PALs are trained to address patient concerns related to clinical trials and the importance of patient participation in clinical research for new and effective treatments. 
 
Role of a PAL: 
 
As a person living with lupus who has been enrolled in a clinical trial, the PAL is a patient advocate providing clinical trial education and peer support to others with lupus. A PAL is meant to be a resource on the topic of clinical trials and deliver educational sessions to their program participants. The PAL should empower individual patients to make informed decisions regarding clinical trials. While PALs will work closely with the healthcare team, they are not to provide medical advice or make decisions for patients. Instead, PALs are there to serve as support and be an additional resource for individuals considering clinical trials. Through their experiences and training, PALs will be able to discuss the clinical research process, concerns about clinical trials, the importance of clinical research, and the reality of participating in a clinical trial with individuals considering trials. In short, PALS ensure that patients have the necessary tools to decide if a trial is right for them beyond the medical aspects. All recruited PALs will also have a community with other patient advocates, in addition to continued support from LT and their program partners.  
 
PAL Qualifications: 
 
The most important qualifications of a PAL are living with lupus and having personal experience with a clinical trial and patient advocacy. Additionally, PALs will need to do the following:  
 
‣ Understand and respect that everyone has their own unique lupus experience  
‣ Respect that individuals may have different priorities with regards to their treatment 
‣ Be empathetic while remaining objective 
‣ Withhold judgment and offer support and information to individuals that the PAL may not personally agree with 
‣ Listen patiently, considering different levels of knowledge and comprehension around clinical research 
‣ Be able to connect with individuals from diverse backgrounds and treat individuals from all backgrounds with respect and integrity  
 
 
Please fill out the application by October 27th, 2023 if you are interested in becoming a PAL. If there are any questions, do not hesitate to reach out to Carla Menezes, Program Manager of Patient Engagement, at cmenezes@lupusresearch.org. Thank you for your interest! 
 

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