Title of paper: Lung Cancer Patient Advocacy: Progress and New Challenges Since 2006
Authors: J-L Pujol, U. Basu Roy, J. Feldman, C. Egwuenu. Journal of Thoracic Oncology, 2026.
Article URL: https://www.jto.org/article/S1556-0864(26)00345-X/fulltext, https://www.researchgate.net/publication/411193124_Lung_Cancer_Patient_Advocacy_Progress_and_New_Challenges_Since_2006
Lung cancer patients have long received less public recognition and had access to weaker organised support than communities such as breast or paediatric cancer, a gap that widened in the 1990s when limited benefit from systemic therapies discouraged the growth of advocacy networks. Over the past two decades, advances in therapy, diagnostics, screening and surgical/radiotherapy technique have transformed the patient experience. Advocacy organisations are playing significant roles in translating these scientific gains into equitable, patient-centred care. At the twentieth anniversary of the Journal of Thoracic Oncology, the authors of this paper, for the first time, defined the historical arc of lung cancer, how US lung cancer advocacy has evolved since 2006, and recommended what is required to secure equitable, patient-centred outcomes.
A central piece of new knowledge in the paper is its periodisation of US lung cancer advocacy into six distinct eras, summarised below. This framework names and dates a trajectory for lung cancer patient advocacy, moving from a largely invisible, poorly supported field toward a professionalised, collaborative and increasingly patient-led movement, in which advocates’ input is now considered essential to research rather than merely valuable.
| Era | Period | Defining development |
| Fearless era | 2001 – 2004 | Genesis of dedicated advocacy: first organisation and initial private research funding |
| Speak now era | 2005 – 2009 | Advocacy found its collective voice, generating further private funding and new groups |
| Community era | 2010 – 2014 | Social media leveraged to build unprecedented connections among patients |
| Reputation era | 2015 – 2019 | Online biomarker communities established; advocates positioned as collaborators in science |
| Resilience era | 2020 – 2022 | COVID-19 disrupted engagement; advocates positioned as collaborators in science |
| Collaboration era | 2023 – 2025 | Advocates and researchers work as genuine partners; advocate input essential to research |
Building on this framework, the authors newly consolidate the range of outcomes attributable to advocacy across the period;
- Policy: stronger tobacco-control legislation aligned with the Framework Convention on Tobacco Control, and patient representation in policy and regulatory decision-making.
- Screening and treatment access: expansion of screening from clinical trials into population-based programmes, and improved awareness of and access to tyrosine kinase inhibitors and immuno-oncology drugs.
- Research infrastructure: growth in research funding, clinical trial engagement, and stronger international coalitions and coordination.
- Culture and language: efforts to reduce stigma, embed person-first language, and gain greater recognition of survivorship as part of comprehensive care.
The paper further characterises how the advocate’s function itself has changed: from awareness-raising and peer support toward genuine co-design across the entire research continuum. Advocates now shape research questions, review protocols and consent materials, contribute to the development of patient-reported outcome measures, help address recruitment barriers in underserved communities, and support dissemination of findings, a shift the authors present as a defining feature of the current era.
The paper also brings new critical attention to several unresolved problems. Stigma persists, rooted in the enduring public perception of lung cancer as a self-inflicted disease which continues to impact the quality of life for those with this health condition. Inequities in access to screening, diagnostics and treatment remain pronounced, driven by socioeconomic and geographic factors, with disparities evident both between and within countries. The authors specifically flag that existing patient-reported outcome measures are inadequate for capturing the lived impact of treatment toxicities, and that dosing strategies in the precision-medicine era remain imprecise because trials are often not designed to balance efficacy against tolerability. They further argue that survivorship care is not yet equipped to address the compounding effects of multiple therapy lines, or to distinguish between fear of recurrence and fear of progression, a nuance that is not always articulated during care.
The authors also report on the first Pan-African Lung Cancer Conference, held in Accra, Ghana, in January 2025, focusing on a workshop that brought together 42 advocates from across Africa and beyond. This workshop identified early detection, caregiver support, policy reform and community-led education as immediate priorities, while acknowledging that diagnostic and treatment infrastructure will require longer-term development.
The paper’s central recommendation is that lung cancer patient advocacy should
- Be built into the formal architecture of research and care
- Have a standing role in designing trials, shaping clinical guidelines, carrying out research, setting policy and sharing results,
This is important so that advances in lung cancer management and care reach patients equitably and without delay. The authors introduce the concept of an “Impact Era – where success is measured not only by how long people with lung cancer live, but by how well they live”. This points to a forward-looking framing that extends the paper’s historical six-era model into a call to action, arguing that advocacy will remain indispensable in driving researchers, regulators and health systems toward more equitable, patient-centred care.
