Patient Advocates Committee

The Patient Advocates Committee (PA) within the International Association for the Study of Lung Cancer (IASLC) is a dedicated group of individuals committed to ensuring that the IASLC effectively addresses the informational needs of the public, advocates, and patients living with lung and thoracic cancers regarding issues of importance in thoracic oncology. The PA Committee works to address the direct impact research has on its beneficiaries, patients with lung cancer, and how they can support continued research to improve treatment options and availability. By actively advocating for patient perspectives, the PA Committee informs decision-making processes by the IASLC Board and other committees to ensure that the Association's activities align with the needs of patients with lung cancer. 
Patient Advocates Committee 2025

Committee projects

Compassion Fatigue

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.

Advancing & Implementing the IASLC Language Guide

Person-first language puts the person before the disease and describes what the person has, not who the person is. For example, saying "person with lung cancer" instead of "lung cancer patient." The IASLC Language Guide provides guidelines on best practices with common phrases used during presentations at IASLC conferences and within submitted abstracts. The Committee is working to advance the understanding and application of effective person-first language in all communications. Current plans to expand the IASLC Language Guide include suggesting acronyms to address concerns around word count and complexity in lung cancer terminology and abstracts, expanding current pillars, and adding new pillars.
Learn more

Global Needs Assessment

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.

Patient-Reported Outcomes & Experiences

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.

Chair of Committee

Merel Hennink
Merel Hennink
2025-2027

2025-2027 Roster

Caleb Egwuenu
Nigeria
Move Against Cancer Africa
Deputy Committee Chair
Isabelle Opitz
Switzerland
University Hospital Zurich
Board Liaison
Sara Lindsey Patton
United States
International Association for the Study of Lung Cancer
Staff Liaison
Hiroaki Akamatsu
Japan
Wakayama Medical University
Committee Member
Sydney Barned
United States
Committee Member
John Cannings
Australia
Thoracic Oncology Group of Australasia
Committee Member
Andrew Ciupek
United States
GO2 for Lung Cancer
Committee Member
Yvonne Diaz
United Kingdom
Oncogene Cancer Research
Committee Member
Jill Feldman
United States
EGFR Resisters
Committee Member
Yoshiyuki Kenmotsu
Japan
Kin-ikyo Chuo Hospital
Committee Member
Angeline Low
Australia
Committee Member
Nabanita Mandal
India
Narikeldaha Prayas
Committee Member
Emily Matthews
United States
Moffitt Cancer Center
Committee Member
Chijioke Mba
Nigeria
Institute of Human Virology
Committee Member
Drew Moghanaki
United States
UCLA Jonsson Cancer Center
Committee Member
Kim Norris
United States
Lung Cancer Foundation of America
Committee Member
Cecilia Pompili
Italy
University of Hull
Committee Member
Christine Qiong Wu
Canada
University of Manitoba
Committee Member
Shani Shilo
Israel
The Israel Lung Cancer Foundation
Committee Member
Catherine Shu
United States
Columbia University Medical Center
Committee Member
Elaine Shum
United States
NYU Perlmutter Cancer Center
Committee Member
Katy Tong
China
Cancerinformation.com, HK Charity Foundation
Committee Member
Paul Wheatley-Price
Canada
University of Ottawa, The Ottawa Hospital Cancer Centre
Committee Member
Satoko Yamaoka
Japan
ARUN
Committee Member
Hiroshige Yoshioka
Japan
Kansai Medical University
Committee Member

Committee Responsibilities:

  1. Provide Recommendations to the IASLC Board: The PA Committee will proactively provide recommendations to the IASLC Board about issues facing patients and the patient advocate community. These recommendations will be derived from insights gained through ongoing engagement with patients, caregivers, and advocacy groups and will serve to guide the Association's initiatives and policies, prioritizing patient-centered approaches. 
  2. Advocate for Patient and Caregiver Involvement: The Committee will actively advise and advocate for effective ways to involve more patients and caregivers in the activities of the Association. By promoting inclusive patient engagement, the Committee aims to ensure that patient perspectives are heard, valued, and integrated into all aspects of lung cancer care and research. 
  3. Consultation and Feedback: Members of the PA Committee will provide consultation and feedback, as requested, on the development of materials and content that support the informational needs of healthcare providers, the public, and patient advocates. This feedback will help ensure that educational resources are tailored to the diverse needs of stakeholders. 
  4. Maximize Funding Opportunities and Collaboration: The activities of the PA Committee will strategically support the IASLC in maximizing funding opportunities and fostering collaboration on research funding related to lung cancer. By advocating for resources and research support, the Committee contributes to advancing patient-centered care and initiatives. 
  5. Collaboration with Advocacy Groups: The Committee will actively collaborate with other Lung Cancer Advocacy Groups, both within and outside the IASLC, to identify opportunities and make recommendations to the Board of Directors on how advocacy-related issues and sessions can be better incorporated into the World Conference and other IASLC meeting programs. 

Committee Nominations for the 2025-2027 term are now closed.

New Committee Nominations will take place again in 2027.

Let us know if you're interested in applying in 2027 here