New Report Reveals Significant Gaps in Patient Information and Involvement for Oncogene-Driven Lung Cancers in Europe
London, 10 June 2025 – Today, Oncogene Cancer Research, in collaboration with Lung Cancer Europe (LuCE) and 40 member organizations, released a report shedding light on the experiences of over 1,000 people impacted by oncogene-driven lung cancers across Europe. The report, titled “Empowering Voices: Knowledge and Decision-Making Among People Impacted by Lung Cancer in Europe,” highlights concerning gaps in patient information and involvement in treatment decisions.
The research, which features data from 1,078 participants with oncogene-driven lung cancers such as ALK, EGFR, KRAS, PD-L1, and ROS1, identified a communication crisis in the healthcare system. It revealed alarming gaps in patient understanding and engagement, with only 1 in 4 participants reporting a very good level of knowledge about their disease. Additionally, around 25% of respondents had difficulty understanding the information they received, and 40-50% felt dissatisfied with their level of involvement in shared decision-making.
According to Yvonne Diaz, Co-founder and Chair of Oncogene Cancer Research and member of the report working group, “As someone living with stage 4 lung cancer, I know first-hand how critical it is to receive information that’s not just accurate, but understandable. If patients and care partners are left confused, overwhelmed, or unable to participate in shared decision-making, we risk missing vital treatment windows – and eroding trust. Our healthcare system needs to speak to patients, not at them.”
The report also highlighted systemic issues during the diagnostic phase, with more than 1 in 3 participants reporting insufficient information about their diagnostic pathway. Between 37% and 56% of respondents across different oncogene-driven groups reported inadequate access to healthcare teams during these crucial early stages. The research identified the greatest informational needs of patients as access and eligibility for clinical trials, side effects management and expectations, nutritional and exercise guidance, and psychological counseling support.
Despite these challenges, the study found nearly universal agreement (98% of respondents) that their opinions should be considered in treatment decision-making. However, the reality falls short of this expectation, with only 50-70% of participants feeling their treatment aligned with their personal preferences.
Jan Clark, Co-founder and Secretary of Oncogene Cancer Research, and mother to a daughter diagnosed with stage 4 ALK+ lung cancer at the age of 20, emphasized the importance of clear communication, stating, “When your young adult child or loved one is facing a life-changing cancer diagnosis, clear communication isn’t just important, it’s everything. The fact that nearly half of families aren’t getting the information they need to make informed decisions together is unacceptable. Every family deserves to understand their options and feel confident in their care decisions.”
In light of these findings, the report issues urgent recommendations for healthcare providers, including providing complete, clear, and comprehensive information tailored to individual preferences and needs, developing communication strategies that actively support shared decision-making, allocating adequate consultation time for meaningful patient-provider dialogue, and simplifying complex medical information without compromising accuracy.
The full LuCE report can be found here. For more information about Oncogene Cancer Research and their mission to extend both the length and quality of life for people living with oncogene-driven lung cancers, please visit www.oncogeneresearch.org. To learn more about Lung Cancer Europe (LuCE), please visit www.lungcancereurope.eu.
For media inquiries or other requests, please contact admin@oncogeneresearch.org.
Derick is an experienced reporter having held multiple senior roles for large publishers across Europe. Specialist subjects include small business and financial emerging markets.