Who counts as a lung cancer expert?
Geoff Otterman, Lung Cancer Advocate, living with ALK+ lung cancer
Lung cancer expertise comes from different places. Clinical practice and scientific research are essential. But living with lung cancer brings knowledge too, and that knowledge has an important role in research, care and decisions about treatment.
Lived experience is a form of lung cancer expertise
A lung cancer diagnosis can bring someone into a world they may never have expected to know.
Treatment decisions. Biomarker testing. Side effects. Appointments. Access to medicines. Clinical trials. Healthcare systems. Work. Family life. Financial pressure. Support, or the lack of it.
Living through these things does not make someone a clinician or a scientist. But it does bring knowledge that cannot come from clinical training or research alone.
Different forms of expertise answer different questions.
A clinician understands the medical evidence and how to treat disease. A researcher may understand the biology of lung cancer or how to design a study. Someone living with lung cancer knows what the disease and its treatment are actually like to live with.
Good lung cancer research and care need different kinds of expertise.
Lung cancer advocacy is not just telling your story
Personal stories have an important place in advocacy. They can make an issue understandable in a way that statistics sometimes cannot.
But advocacy can go much further.
People with lived experience may develop considerable knowledge of lung cancer research, clinical trials, policy, access to medicines, health technology assessment, healthcare systems, supportive care or community needs.
Some work closely with researchers. Some review research proposals or contribute to clinical trial design. Others focus on policy, treatment access, information or support.
There is no single model of a lung cancer advocate.
The important point is that people affected by lung cancer should not be included simply to describe what happened to them. Their knowledge and experience can contribute to the work itself.
We can already see this happening in lung cancer
Patient-reported outcomes are one example.
Scans, blood tests and survival data tell us important things about treatment. They cannot tell us whether someone can sleep, work, walk to the shops or manage daily life. They cannot tell us which effects of treatment someone considers acceptable.
That information comes directly from the person living with lung cancer.
Patient-reported outcome measures, or PROMs, turn some of that experience into information that can be used in research and care. Research has shown that patient-reported outcomes can provide clinically useful information, yet quality of life is still inconsistently measured and reported in major lung cancer trials. Lung Cancer Europe recently looked at the evidence and why this needs to change.
The same principle goes beyond individual care.
At the Lung Cancer Europe Inaugural Conference in Vienna in 2026, people from our member organisations joined clinicians, researchers, policymakers and industry to discuss the role of lived experience across research, policy and care.
European policy now gives lived experience a formal role
An important change is also taking place at European level.
Under the EU Health Technology Assessment Regulation, patients, carers and clinical experts can contribute as individual experts to Joint Clinical Assessments and Joint Scientific Consultations.
For a Joint Clinical Assessment, people with lived experience can review the draft assessment scope, including the population, treatment, comparison and outcomes that the assessment will examine.
This is important because Joint Clinical Assessments provide a shared European scientific analysis of the clinical evidence for new health technologies. New cancer medicines have been subject to these assessments since January 2025.
The assessment does not decide whether a medicine will be funded or available in an individual country. Those decisions remain national.
But lived experience now has a defined place within the European process used to assess the clinical evidence.
What does this look like in practice?
We have already seen it happen in lung cancer.
In July 2026, the EU published Joint Clinical Assessments for two medicines used in extensive-stage small cell lung cancer: tarlatamab and lurbinectedin.
A caregiver connected with Lung Cancer Europe provided written input for the assessment of lurbinectedin. This meant lived experience contributed alongside the clinical evidence considered during the assessment.
It is a practical example of what meaningful involvement can look like.
The caregiver was not simply being asked to tell their story. They were contributing knowledge to a European assessment of a lung cancer treatment.
Different advocates bring different expertise
Lived experience is not one thing.
Someone diagnosed with lung cancer at a young age may understand gaps around fertility, work, family life or support that are less visible elsewhere.
Someone who has spent years working with researchers may develop substantial knowledge of clinical trials and lung cancer science.
Others may understand national reimbursement systems, inequalities in treatment access, screening policy, supportive care or the needs of a particular lung cancer community.
Caregivers and family members can bring another perspective again.
We should not expect one person to represent every experience of lung cancer.
Meaningful involvement means finding people with the experience and knowledge relevant to the question being asked.
Involvement needs to happen early enough to count
There is little value in asking for someone's views once the important decisions have already been made.
If lived experience is going to improve a research project, trial, policy or service, people need opportunities to contribute while there is still something to influence.
That could mean helping researchers decide which questions to investigate.
It could mean contributing to the design of a clinical trial before recruitment begins.
It could mean identifying outcomes that people living with lung cancer actually value.
Or it could mean contributing to the assessment of a new treatment.
The exact role will differ. The principle does not.
Lung cancer needs different kinds of expertise
Lung cancer has changed enormously.
The science is increasingly complex. Treatment is increasingly personalised. Decisions about access are made through complicated national and European systems.
Meeting those challenges requires clinical and scientific expertise.
It also requires knowledge of what happens when research, treatments and healthcare systems meet real lives.
At Lung Cancer Europe, one of our key messages is that people with lived experience should be partners in science and innovation, including in clinical trial design and innovation pathways. Our Charter also calls for shared decision-making, clear communication and equitable access to care across Europe.
Because when we ask who counts as a lung cancer expert?, lived experience should be part of the answer.
Sources and further reading
Lung Cancer Europe
Patient-reported outcomes: asking people with lung cancer how they areNew treatments for small cell lung cancer in EuropeLung Cancer Europe 2026 Conference reportsEuropean policy
European Commission: EU Health Technology Assessment overviewEuropean Commission: Joint Clinical AssessmentsEuropean Commission: how patients, carers and clinical experts can be involved in EU HTAFurther reading
Monge-Montero C. From Patient Advocacy to Lived Experience Advocacy. OncoDaily, 2026.