Lung cancer treatment and research has been evolving rapidly in the past ten years. As a result, lung cancer now has a growing group of patients who have lived long enough to become advocates for their disease. Patient advocates are dedicated to supporting patients and their loved ones, improving lung cancer education and awareness, and generating funds for advocacy and awarding grants.
There is another type of cancer advocacy called “research advocacy.” Research advocates are volunteers with a personal connection to cancer who are passionate about helping research translate into meaningful outcomes for patients and their families. Lung cancer research advocates provide the perspective of the lung cancer patient community to help research focus on the questions most important to patients and create studies that will extend lives and improve quality of life for people who have lung cancer.
The IASLC is a scientific membership organization that recognizes the importance of patient research advocates within the research ecosystem. The IASLC Supportive Training for Advocates on Research & Science (STARS) program aims to increase the number of patient research advocates (PRAs) equipped to provide accurate scientific translation in their online or real-life groups for patients with lung cancer and their caregivers, and to provide the patient perspective for lung cancer research and policy. STARS is not intended to help patients or caregivers learn how to become patient advocates or share their personal lung cancer story.
Our inaugural group was comprised of patients and mentors from around the globe. The exchange of information, increased familiarity and comfort with research, and formation of new mentor—mentee relationships have inspired the participants to share their new knowledge with their respective patient support groups.
STARS 2021
PATIENT RESEARCH ADVOCATES
https://www.iaslc.org/patient-advocacy/stars-participants
International Association for the Study of Lung Cancer
47