On 25 June, Lungs Europe organised an online webinar – “Involving patients in EU projects” as part of the European Patient Ambassador Programme. The webinar focused on introducing the different EU funding schemes. The event invited patient organisations, patient representatives and patients themselves to share their experiences of being involved in health research projects and discuss the role patients can play in projects.
The EU provides funding for public health actions and medical research across Europe. These opportunities are important as they can give patients and patient organisations an opportunity to engage early on in research at the European level.
One of the panellists was Seamus Cotter, a patient from Ireland who was diagnosed with stage 4 lung cancer in 2016. He shared his experience of participating in the OPTIMA project as a member of the ELF Lung Cancer Patient Advisory Group (PAG).
OPTIMA is a collaborative project that aims to improve treatment and care for lung, breast and prostate cancer. OPTIMA will use artificial intelligence to improve treatments and support both doctors and patients in making informed decisions to select the right treatment.
Seamus sits on the Patient and Public Advisory Board and liaises with healthcare professionals who seek feedback from patients to improve their work on all aspects of the project.
Seamus admitted that patient participation in OPTIMA has not always been straightforward. A survey conducted by the project, aimed at both patients and clinicians, was found to be too complex for most patients to complete. Lessons have been learned, however, and the project has welcomed involvement from ELF in explaining how to better word communication so that all patients can follow and understand it.
Seamus is convinced that patients play a crucial role in OPTIMA by offering advice and input into the project and checking that the project outputs are relevant and can be understood by patients. The OPTIMA project is an example of how patients who have lived experience of lung cancer, can share their knowledge and opinions to improve project outcomes.
Lungs Europe encourages patient participation in various projects, and the European Patient Ambassador Programme is one way in which a patient can prepare to become a member of a patient advisory board and interact with other project participants, as Seamus is doing in the OPTIMA project.
Watch a recording of the EPAP Live webinar
Find out more about OPTIMA
The Lungs Europe enterprise number is 0738.383.695
