We are excited to announce that our manuscript “Patients Demonstrate Lack of Understanding in How PRO Data Are Used: Reflections from a Lung Cancer Patient Roundtable,” was published on October 22 in the esteemed medical journal, the Journal of Thoracic Oncology (JTO). The article, which was co-authored by members of the FDA, discusses LUNGevity’s work with the FDA on patient-reported outcomes (PROs), particularly the feedback gathered at a patient Roundtable on PROs at last year’s HOPE Summit. This Roundtable illuminated an important potential gap in current patient education about safety reporting and the use of PROs in clinical trials, as many patients present admitted to under-reporting or failing to report at all adverse events in order to ensure their spot on a trial. The article enforces the importance of educating patients about accurate and timely symptom reporting, as this can lead to supportive care to relieve suffering and maximize the ability to remain on their investigational cancer therapy. By understanding the reasons behind symptom monitoring and PRO assessments, trial patients can benefit from timely supportive care, and future patients can make standard treatment choices based on accurate safety data and complementary PRO data obtained from clinical trials. PROs can be an important source of data that can be used for future patients, but only if those reporting them understand why it is being collected and protect themselves first. This is an important step forward to truly bring the patient voice into patient-focused drug development. Through this publication and ongoing effort, LUNGevity is working to ensure that the patients' values and considerations are at the forefront of regulatory and clinical decision making. We are very excited by this milestone and hope that you are too! Learn more about this and LUNGevity’s many other programs and initiatives by visiting our website, www.LUNGevity.org. Best regards, Andrea Ferris |