LungHealth4Life
LungHealth4Life (LH4L) is a pioneering project started in September 2024 with the EU4Health programme to address the social, environmental and educational factors influencing health to transform lung health through early intervention, health promotion, and disease prevention in schools across Europe.
The project is coordinated by Lungs Europe and EFA leads the Work Package on Stakeholder Engagement and Community of Practice (COP). The aim of this work package is to ensure collaboration among key actors, including respiratory patients’ groups, healthcare professionals (HCPs), educational specialists, psychologists, public health experts and national and EU educational and health authorities/institutes.
In 2024, EFA led a stakeholder mapping in lung health, education and public health across Europe, to ensure inclusive and effective engagement of experts within the COP. We also prepared the launch and promotion of the COP and worked with the project’s communication partner to publish the COP webpage on the project’s website. Finally, we contributed to key project deliverables such as the Project Management Manual and the Communication and Dissemination Strategy.
3TR – Identification of the Molecular Mechanisms of non-response to Treatments, Relapses and Remission in Autoimmune, Inflammatory, Allergic Conditions
The 3TR project (taxonomy, treatment, target and remission) aims at identifying biomarkers and molecular mechanisms that underlie the response (or non-response) to treatment. Launched in November 2019, the project investigates seven immune-mediated, allergic and inflammatory diseases, including asthma and COPD. Within the project, EFA, together with the European Lung Foundation, coordinates a Respiratory Patient Working Group (RPWG) composed of 16 patients with asthma and COPD. The RPWG advises researchers on patients’ needs and priorities, contributing to an improved personalised therapy for asthma and COPD patients.
In 2024, the RPWG helped to improve the design and the quality of the information shared with the patients who participated in the Air Bio Cohort study. This three-year study focuses on the effectiveness of biological treatment on patients with severe asthma, by collecting clinical data and samples to identify asthma remission predictors and new treatment targets. The PWG provided feedback in particular on how to make study participation easier for patients, how to improve the information included in patient leaflets, and on the valuable patient-reported outcomes (more details: https://3trbio.com/).
The RPWG also reviewed the Clinical Trial Protocol, participant information and leaflet for a new research study (3TR-ICS COPD), which aims at investigating the effect of inhaled corticosteroids (ICS) on the airways and blood of COPD patients who are treated with bronchodilators.
Acknowledgements
ImmUniverse: Advancing Care for Immune-Mediated Diseases
ImmUniverse is a project seeking to improve diagnostic and therapeutic options for patients living with immune-mediated inflammatory diseases, including atopic eczema. Within the project, EFA coordinates a Patient Input Platform (PIP) together with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). The PIP is composed of 15 patients with atopic eczema and ulcerative colitis from 11 European countries (including members from the EFA Community) and helps ensure the research stays relevant to the needs of patients.
In 2024, the PIP contributed twice to the project. In June, the PIP provided feedback to the researchers on the main research questions and data collection methodology, by suggesting additional questions to explore disease development and treatment responses. In November PIP members discussed with the researchers how their suggestions from the first consultation had influenced the research, ensuring it aligned with patient priorities.
TOLIFE – Combining Artificial Intelligence and smart sensing TOward better management and improved quality of LIFE in chronic obstructive pulmonary disease.
TOLIFE is an EU Horizon research project that aims to develop a clinically validated, AI-driven technology to anticipate and prevent COPD exacerbations. It strives to enable early intervention and tailor treatments for individual needs, potentially transforming the quality of life of COPD patients. Within the project, EFA facilitates the Patient Advisory Group (PAG) which gathers nine patient experts from the EFA community. Their participation in TOLIFE ensures that the work of researchers is informed firsthand with COPD patients’ needs and priorities.
In 2024, EFA facilitated the input of the PAG on several topics actively contributing to a patient-centred research. The PAG participated in training sessions, provided feedback on smart sensor selection and clinical study design. The PAG also reviewed the user manual of the TOLIFE kit (which is composed of all the devices used in the clinical study, such as mini-spirometer, smart shoes, smart mattress cover etc.), making it more accessible and easier to understand for patients. The PAG improved first the English version of the manual, and then its Spanish, Catalan, German, and Italian translations. Finally, EFA also led the evaluation of patient acceptance, drafting a strategy and reviewing the questionnaire with PAG input.
Acknowledgments
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.