In this article, we explain the World Cancer Day initiative, and share our Lung Cancer Patient Advisory Group’s plans for the year ahead.
ELF’s Lung Cancer Patient Advisory Group (PAG) includes people who have and have had lung cancer, and patient organisation representatives. Members come from across Europe. They share their views and experiences to help improve treatment and healthcare for those affected by lung cancer. The PAG met online in January to plan their activities for the year ahead. Here, members share their plans.
The PAG are already involved in the OPTIMA project. OPTIMA is an Innovative Health Initiative (IHI)-funded project looking at lung, prostate and breast cancers. Its vision is for every patient to have access to the most up-to-date individualised treatments and therapies. The PAG have been sharing their views on what matters most to patients and what practical outcomes they want to see from the project.
In 2023, the PAG plan to get involved with an exciting new project called SOLACE. SOLACE aims to make sure that all EU countries have lung cancer screening programmes that are effective, high quality and easy for patients to access. The PAG want to make sure that patients’ views are central to the project. They are keen to share their experiences of lung cancer screening programmes in their home countries.
Members would also like to see equal access to lung cancer screening for people across Europe, so they are particularly excited to be involved in projects like SOLACE that aim to make this a reality.
A task force is a group of lung health experts working together to produce guidance on how to diagnose, treat, and manage different lung conditions and symptoms. The PAG have been involved in a task force that has produced guidelines for clinicians on quality standards in lung cancer care. The guidelines explain the standards that health professionals should meet to provide the most effective care to patients. The PAG made sure that the guidelines included patients’ priorities. The task force recently published the new guidelines. You can read a lay version here.
The PAG are also involved in a current task force that is producing guidelines on fitness for therapy. The guidelines will ensure that people with lung cancer receive the most appropriate treatment for their individual circumstances.
The PAG wants to make sure that people with lung cancer and their families receive the latest, most accurate information available. Treatment for lung cancer has changed significantly over the last decade. Now, many people survive lung cancer, or live for many years with the disease. But this also means that some people are living with side effects from treatment. The PAG plans to work with ELF to make sure the information we provide is up-to-date and helpful as possible.
Some years ago the PAG was instrumental in creating a Patient Priorities project for ELF for its website so plans to help update the information to reflect current practices and experiences.
PAG member Janette Rawlinson commented “In recent years since the Lung Cancer PAG was set up, there have been many developments from research to create new treatments for lung cancer, detect it sooner and improve the lives of those who develop it in recent years. Being part of the Patient Advisory Group is an interesting way of contributing our lived experience views to those developing studies, guidelines or new treatments. We’re a friendly group – learning and contributing to help others across Europe affected by lung cancer.”
Would you like to join our lung cancer PAG and help influence treatment and care for lung cancer? Please contact firstname.lastname@example.org for more information.
OPTIMA is funded through the IMI2 Joint Undertaking and is listed under grant agreement No. 101034347. IMI2 receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA). IMI supports collaborative research projects and builds networks of industrial and academic experts in order to boost pharmaceutical innovation in Europe.
The views communicated within are those of OPTIMA. Neither the IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained herein.
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