Here, during Lung Cancer Awareness Month, members of the ELF Lung Cancer Patient Advisory Group (PAG) explain their reasons for joining the PAG. They share what they would like people to know about lung cancer, the PAG’s biggest achievements and their hopes for the future.
Our PAG was formed in 2015 when ELF started a new Patient Priorities project on lung cancer. The Patient Priorities website contains information and patient-led guidance developed with those of us with lived experience of lung conditions and experts in the field, and links to latest research and support networks across Europe. Our PAG brought together people with experience of lung cancer from across Europe to guide the project and to contribute our various experiences and views.
We have since been involved in many other new projects and initiatives. We currently have 11 members, based in the Czech Republic, Germany, Ireland, Italy, Poland, Spain and the United Kingdom. Some of us are lung cancer survivors and some of us represent patient organisations focused on lung cancer. We are always looking for new members to join us so if you are interested or would like to find out more, please contact clare.williams@europeanlung.org
We think it is vital that lung cancer patients are represented in research and involved in treatment decisions. Being in the PAG allows us a voice to influence research and treatment to help improve the situation for lung cancer patients across Europe. It also enables us to keep up to date with the latest research, as we meet researchers and clinicians who are leaders in lung cancer care.
Sadly, three of our members have passed away since we started but we have supported each other as members’ situations change or new members joined. We continue advocating for patients as it is one of the best ways to raise awareness and help ourselves, others and serve their memory as legacy. In the picture shared with this article is one of our former members, Tom Simpson, who made an outstanding and an amazing contribution towards lung cancer care before he unfortunately passed away too soon.
Many people think that lung cancer is just a smokers’ disease or that only older people develop it, which is not true. If you have lungs, you can develop lung cancer. We want people to be aware of the symptoms of lung cancer, such as a persistent cough, so they get a check-up. If you are diagnosed early, the condition is much easier to treat. People often assume that lung cancer is a death sentence but there have been many treatment advances in recent years and some of us have survived lung cancer and others live with it.
We also want to highlight the inequalities in screening programmes throughout Europe. Screening can help identify early lung cancer before symptoms develop and can save lives. We would like to see screening available across Europe, targeted at those most likely to develop the disease.
It is not always easy to know what to say when someone is diagnosed with cancer, and how people want to be treated is a very individual thing – so please ask. Most people will want you to treat them just the same as before. Some will want to talk about things and others will prefer not to. We encourage family and friends to just be there for the person, to listen and ask if there is anything they need. It is important to reassure them that there is hope, due to the many advances in lung cancer care. Don’t ask the person if they smoked: non-smokers can develop lung cancer too, and those who did smoke might be feeling guilty for developing it so will not want to be reminded about the link with smoking.
There is a lot of support available for patients and their family and friends, together with up-to-date and reliable information on treatments. You can find details of relevant organisations in ELF’s network here.
The Patient Priorities programme provided high-quality information about lung cancer targeted to patients and their family and friends. Since then we have been involved in several different projects, helping to influence research and treatment – including developing a decision aid tool to help people diagnosed with stage III/N2 lung cancer to explore their treatment options. We are proud to represent patients in research groups and at conferences, improving awareness and understanding.
We have just started working on an exciting new EU project called OPTIMA, aiming to improve treatment for lung, breast and prostate cancers by gathering a large amount of clinical data and using artificial intelligence to analyse it. We invite anyone with experience of lung, breast or prostate cancer to get involved. To help set the research priorities for OPTIMA, we have developed a survey for anyone affected by lung cancer to tell us about their experiences. You can complete it here.
We are hoping to grow the PAG and include new members, especially those with rarer types of lung cancer such as mesothelioma, so their perspectives can be included in our work. We plan to continue to influence research into lung cancer and eventually would like to see a specific treatment for every type of lung cancer.
It is a way of making something positive from a negative experience. We have a real influence on research and better treatments for lung cancer. Taking part in meetings and conferences helps improve our own knowledge and confidence and keeps us up-to-date with breakthroughs in research and treatment.
Being part of the PAG also means that you meet others in similar situations as you and together we can share thoughts and experiences – it feels like a real community.
If you are interested in joining the Lung Cancer PAG, please contact clare.williams@europeanlung.org
We have Patient Advisory Groups covering a range of other lung disease topics, many of which are currently welcoming new members. Find out how you could get involved in a PAG
