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European Lung Foundation

ELF

ELF is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.

Lobbying Activity

Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament)

22 Jan 2025 · Follow-up Respiratory Initiative

Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament)

17 Dec 2024 · Introductory Meeting

Response to A comprehensive approach to mental health

15 Feb 2023

European Lung Foundation submission to the European Commissions call for evidence on mental health: A comprehensive approach to mental health The European Lung Foundation (ELF), a patient-led organisation that brings together lung patients, health professionals and the public, appreciates the opportunity to input into the call for evidence on a comprehensive approach to mental health. We completely support the efforts of the European Commission to promote good mental health, and to prevent, mitigate and respond to mental health challenges, as well as its intention to factor mental health considerations into a wide variety of resilient EU and national policies. Given this opportunity, we aim to provide an insight into the interconnectivity of mental health and lung conditions. We hope that our contribution will shed light on the psychological needs of people with respiratory diseases. Our response has been put together using a number of sources, along with the testimonials of people living with lung conditions, with whom we have been working closely to hold workshops, meaningful discussions and produce videos about their lived experience. Mental health is as important as physical health and one impacts the other , not only in everyday life, but especially during treatment and/or recovery from disease . People who live with lung conditions are likely to experience issues with their mental health and well-being. This can be due to several factors including: difficulty carrying out daily activities, concerns about being breathless (some individuals with a lung condition may avoid exercising, or walking, as they fear running out of breath), or general concern about their lung condition . Individuals also have concerns about taking medication, due to some of the impacts (e.g. steroids and weight gain), while others need to regularly take antibiotics to fight infections. Finally, many patients avoid socialising due to symptoms and visible presentations of disease (e.g. coughing, cyanosis), leading to a feeling of isolation . Feeling that symptoms are out of control can lead to poorer mental well-being. This could result in a vicious circle and in deterioration of a persons quality of life. From our Patient Advisory Groups we have gathered multiple testimonials from people with different lung conditions, such as severe asthma, long-COVID, lung cancer, pulmonary fibrosis and pulmonary hypertension. Our Patient Advisory Groups have told us how their conditions have affected their everyday lives, their experiences with healthcare services and facilities, and the way these factors affect them mentally. Their testimonials include the difficulty in getting out and socialising, the lack of a support system at work that could help them be more comfortable and the lack of sufficient national healthcare that has in some cases led to people moving to a different country because of a lack of health security and proper facilities as well as mental rehabilitation. Furthermore, they deal with personal feelings and emotions, the perception of them and their condition by the people around them and the difficulty in finding others with similar experiences. The full text of the ELF submission is attached as a pdf document.
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Response to A European Health Data Space

28 Jul 2022

European Lung Foundation (ELF) appreciates the opportunity to give feedback on the proposal on the European Health Data Space for better healthcare, research and policy-making. Supporting the submission of the European Respiratory Society, ELF endorses their recommendations and would like to provide additional patient perspective on this proposed legislation. The COVID-19 pandemic has clearly shown the need for electronic health data for the development of policy response to health emergencies and better preparedness of healthcare services, as well as for fostering research and innovation. It has been an undeniable catalyst for the digital transition in healthcare. Higher numbers of patients with chronic respiratory conditions such as chronic obstructive pulmonary disease (COPD) and asthma among others, used remote consultations and other online tools to ensure continuity of care at a moment of crisis. The European Health Data Space should enable people’s control over their electronic health data, and allow researchers to access and share relevant health data to promote better and person- and patient-centered diagnosis and treatment. We fully support the Commission’s vision to enable individuals’ digital access and control over their health data and support free movement by ensuring the health data portability. However, we believe there are some key pillars of the EHDS proposal that will need further work in order to fulfil its potential. Primary and Secondary use of data:protecting privacy and security First of all, appropriate Primary and Secondary use of data are fundamental for the success of the EHDS proposal. It is crucial to ensure a consistent and efficient framework for the secondary use of citizens’ health data for research, innovation, policy-making and regulatory activities that cannot be sufficiently achieved by the Member States through coordination measures alone. Adequate processes must be created and implemented at local, regional, national and the EU level to bridge the activities of all involved stakeholders and avoid enhancing further health and social inequalities that might be rooted in lack of access to digital tools, health and digital literacy, access to medical programmes and funding. As the exchange of health data will rely on trust, it must be done securely and transparently. Strong safeguards should be implemented to ensure that the fundamental rights of data protection are respected. Health data access bodies aiming to ensure predictable and simplified access to electronic health should guarantee a high level of transparency, accountability, and security in the data processing. Individuals and patients should receive the required level of support in sharing, accessing and managing their own data in a secure and safe manner. In this context, we are ready to work with the EHDS Board that will facilitate cooperation between digital health authorities and health data access bodies. We recommend the board to include in its meetings patients, patient organisations, healthcare professionals, medical experts and societies. We believe that patients should be the driving force behind the creation and implementation of this initiative. Avoid fragmentation and duplication Secondly, the regulatory framework should be selected carefully to avoid legislative fragmentation and different rules and practices across the EU, through standardisation and improved data interoperability. The risk of regional fragmentation should be also taken into account as the initiative might be in the competence of regional rather than national authorities. Data must be shared using a common language with a harmonised data quality, allowing its use within European countries. This should include easy-to-manage bridging between the WHO code systems ICD-10/11 and ICPC-2 (ICD-International Classification of Disease and ICPC-International Classification of Primary Care) to secure data quality and completeness. Full text is attached.
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Meeting with Gerassimos Thomas (Director-General Taxation and Customs Union) and Philip Morris International Inc. and

18 May 2022 · Videoconference - Stakeholder event to gather views on the upcoming revision of the tobacco taxation directive