Create an inclusive understanding of how information dissemination impacts health and increases awareness to create informed co-decision making and compassionate responses.
With 600,000 people in Europe dying from respiratory disease each year and over 10 million life years lost (DALYs), we need to expand knowledge around lung health and illness to drive change. We need more attention for the issues in respiratory health across all stakeholders, particularly the media, to gain a wider appreciation of the range of environmental, behavioural, genetic, and other factors leading to respiratory disease and the impact that poor respiratory health has on physical wellbeing during people’s lives.
A united and empowered community
A common respiratory voice is formed: A united respiratory community should stand behind common goals, enjoying a strong voice which holds stakeholder attention. This voice would be leveraged through respiratory champions including patients and health care professionals. This would include re-inforcing the voice of GARD and aligning with their policy actions. Adopting common overall messaging will enhance the impact of advocacy efforts. One respiratory voice will enhance effectiveness in advocating for policy change, directly engaging MEPs through a European Parliamentary Interest Group or the MEP Lung Health group. Influencers should support this voice, speaking on behalf of respiratory diseases.
Patients are empowered: Respiratory patients are integrated into policy development and research across Europe to create impact and force change. Patients are trusted voices for evidence and campaigners for change. Embracing patients and their representatives should be second nature, and more commitment is needed to involve patients in all decisions that affect them.
People enjoy the right to know: People’s right to know about the diseases that may affect them should be enshrined in policy, particularly as the importance of lung health is not well understood by the European public. Given this, new ways of reaching people should spread knowledge and awareness about how to find quality information. A rights-based approach should provide someone with respiratory disease symptoms, but who is not yet a patient, a perspective on what disease they have. Equally new ways should be developed to approach people who are not yet aware of their disease. Key lung disease issues should be common knowledge among the general public and politicians.
No more lung disease stigma: Lung disease should no longer be associated with self-inflicted harm, with a broad understanding that environmental exposure and occupational factors contribute to disease, as seen with COVID-19. The stigma around tobacco and smoking will be replaced with an understanding of harm prevention, early smoking cessation and stricter policies to reduce its commercialisation. The perceived risk of transmission related to HIV, poverty, migration, or social marginalisation which is seen with tuberculosis and other infectious diseases should be thoroughly addressed and understood.
Informed decisions
Undivided attention for lung disease: Under-diagnosis and misdiagnosis in respiratory disease must be reduced. Rare and less common respiratory diseases are often not diagnosed or are mis-diagnosed. Chronic obstructive pulmonary disease (COPD) often has a long diagnostic delay, while people diagnosed with asthma are eventually diagnosed with another disease. Raising awareness will help patients get a diagnosis quicker and empower professionals to identify these rare conditions, to trigger diagnosis through testing for co-morbidities. Patients with rare lung diseases can help to do this as part of a more effective respiratory health intervention strategy, forcing more attention from policy makers.
All lung health stakeholders are engaged: With the high prevalence of respiratory disease a higher profile of lung health among health care professionals, industry and policy makers should be expected. Increased global awareness on the prevalence, impact and severity of respiratory diseases should help to give lung health the place it deserves. All stakeholders should use a common language, for example adhering to definitions of asthma and severe asthma. The collaboration on respiratory health advocacy will engage with this vision and reach out to other stakeholders.
Evidence-based information is ensured, countering misinformation: The COVID-19 pandemic has shown that misinformation can spread very fast from non-professional sources and become very difficult to redress. Tackling this phenomenon requires a focused response, impetus, and professional advice from the lung health community to ensure the best evidence is easily available.
Addressed policy gaps
The EU Health programme explicitly addresses respiratory diseases. The recognition of respiratory health as a public health priority should provide a legislative hook for all the policies affecting respiratory disease. Relevant European Reference Networks (e.g. ERN-lung) can then be better leveraged for specific actions, clinical research, environmental framework and climate change policies will link to better respiratory health outcomes, resulting in systematic implementation of awareness and prevention campaigns. EU paediatric regulation should also be reviewed to account for respiratory health issues. A particular focus on lung health during childhood should be prominent, as this is a major predictor of ill health in adults, making it a valuable area for policy intervention.
Asthma prevalence in some European countries is amongst the highest in the world, with the Netherlands, Sweden and the United Kingdom having prevalence rates of 15% or higher.
Patient representatives participate in all decisions affecting them: By 2030 lung patients should be at heart of high-impact decision-making. From ethical and advisory boards ranging from research frameworks to EU strategies, to patient science presentations, lung patients should drive a needs-based agenda to promote change. A strengthened, unified respiratory community should reach high political levels, addressing policy gaps and disease specific issues to gain the attention lung health deserves. MEPs should enjoy strong and direct patient and professional input on decisions affecting patients. National level policy making should be equally impacted with patients involved in policy decisions.
Regulations are harmonised across Europe: Different rules lead to loopholes and to inequity in respiratory health across Europe. By 2030 the EU should lead the way in advocating for the harmonisation of regulations that have a major impact on lung health. This includes tobacco taxation and providing universal rights for treatment.
