Patient Advocates Committee

The project aims to address and explore the critical topic of compassion fatigue—a common challenge faced by professionals in the field of oncology. Following a successful workshop at WCLC 2024, the team is developing enduring educational materials that discuss the root causes of compassion fatigue, its connection to being a healthcare professional and to character, how to recognize if one suffers from it, and how to manage and overcome it.

The focus is on promoting empathetic self-care, which is essential for the well-being of healthcare professionals, enabling them to maintain resilience and deliver optimal patient care.

This project focuses on conducting a global needs assessment to identify gaps and opportunities in patient advocacy within the lung cancer community. By engaging with advocacy organizations worldwide through interviews and Q&A sessions, the team aims to gather critical insights that will help shape and prioritize future initiatives. As part of this effort, a comprehensive resource is being built on the IASLC website, featuring a global directory of patient advocacy groups (PAGs). This resource will include detailed information on each organization and how to connect with them, fostering stronger collaborations and support networks across regions.

This initiative comprises three distinct parts tailored for specific target audiences:

Clinic: Geared towards healthcare providers (HCPs), advocacy groups, and patients undergoing treatment, the objective is to enhance the management of side effects and improve the quality of life for patients during their visits by assembling a simple IASLC-branded guide for the HCPs.

Clinical Studies: This component is directed at industry stakeholders, regulatory bodies, and research entities. The aim is to establish a Consensus Statement or white paper outlining a set of essential patient-reported outcomes (PROs) to be universally measured in all lung cancer clinical trials. This will be achieved by a group of global multidisciplinary stakeholders and representatives.

Real-World Data: This document is designed for industry representatives, HCPs, advocacy groups, and regulatory bodies. The focus is on how to assemble, collect, and publish real-world data to inform decision-making and advance patient care.