# Patient Advocacy in Transforming Surgical Lung Cancer Care in Europe

**Authors:** Cecilia Pompili, Antonio Ungaro, Korina Pateli-Bell, Shani Shilo, Merel Hennink, Yvonne Diaz, Stefania Vallone, Silvia Novello, Debra Montague

PMC · DOI: 10.1093/icvts/ivag012 · 2026-01-08

## TL;DR

Patient advocacy groups in Europe are transforming lung cancer surgery by promoting communication, equity, and patient-centered care.

## Contribution

This paper provides a European-focused narrative review on how patient advocacy groups influence surgical lung cancer care.

## Key findings

- Patient advocacy organizations have driven initiatives impacting thoracic surgery and perioperative care.
- Examples include promoting molecular testing, structured psycho-social support, and shared decision-making tools.
- Collaboration with advocacy groups enhances integrated and patient-centered surgical care.

## Abstract

To provide a European-focused overview of the role of patient advocacy groups in shaping surgical lung cancer care, highlighting their contributions to multidisciplinary care, equitable access, psycho-social support, and patient-centred research.

We conducted a narrative review of the major European and national lung cancer advocacy organizations, integrating perspectives from patient leaders and thoracic surgeons. The analysis focused on initiatives directly impacting thoracic surgery and perioperative care, with attention to education, prevention, survivorship, and research advocacy.

Multiple advocacy organizations have significantly influenced lung cancer care with relevance to surgery. Oncogene Cancer Research (UK) promotes transparent information and shared decision-making around surgical options across all disease stages. Women Against Lung Cancer in Europe delivers large-scale initiatives such as European Program for ROutine testing of Patients with Advanced lung cancer, expanding molecular testing and psycho-social support across several European countries. The Israeli Lung Cancer Foundation secured national low-dose CT screening and mandatory multidisciplinary team review for early-stage patients. In Greece, FairLife launched the BREATH program, providing structured psycho-social support integrated with surgical pathways. Longkanker Nederland advances shared decision-making through national decision aids, patient-reported outcomes, and guideline development. ALK Positive UK develops tailored education for patients and clinicians, addressing the impact of biomarker status on surgical pathways. At the European level, Lung Cancer Europe drives large-scale surveys, awareness campaigns, and collaborations with European Society of Thoracic Surgery to embed patient perspectives into surgical discussions.

Patient advocacy is increasingly shaping thoracic surgery in Europe, bridging gaps in communication, equity, and research. By collaborating with advocacy organizations, surgeons can deliver more integrated, communicative, and patient-centred care, ensuring that surgical innovation aligns with the lived experiences and priorities of patients.

Patient advocacy in lung cancer has driven transformative changes in clinical practice over the past 3 decades.

## Linked entities

- **Diseases:** lung cancer (MONDO:0005138)

## Full-text entities

- **Genes:** ALK (ALK receptor tyrosine kinase) [NCBI Gene 238] {aka ALK1, CD246, NBLST3}
- **Diseases:** Lung Cancer (MESH:D008175), Cancer (MESH:D009369)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Figures

4 figures with captions in the complete paper: https://tomesphere.com/paper/PMC12854718/full.md

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Source: https://tomesphere.com/paper/PMC12854718