Sharing the WHO report on chronic respiratory disease: patient organisation toolkit

The World Health Organization and European Respiratory Society have launched a new report on chronic respiratory diseases (CRDs). This is the first report of its kind from the WHO, and it reveals a major issue: asthma, COPD, and other long-term lung diseases are often not diagnosed, not managed well, and their impact on health systems is much bigger than people think. The report shines a light on how serious the problem really is and urges countries in the WHO European Region to take action together—and quickly.

We have prepared a toolkit for the ELF Patient Organisation network to help disseminate the findings of the report with your own networks. The report is an important milestone as the first-ever regional report into the impact of CRDs. We want to use this launch to drive action across the region to improve lives and public health.

Useful links:

• WHO news article
• ERS news article
• ELF news article
• WHO report online

Key messages from the report

• Chronic respiratory diseases affect 81.7 million people in the 53 countries of the WHO European Region and an estimated productivity loss of $21 billion annually.
• COPD and asthma account for the majority of CRD cases in the Region, and COPD is responsible for 80% of CRD-related deaths. Future projections indicate that COPD cases will rise globally by 23% between 2020 and 2050, with the steepest increases among women and in low- and middle-income countries.
• Tobacco remains the main avoidable cause of lung disease in the Region, where 25.3% of adults still smoke – well above the global average of 20.9%. The number of young people using e-cigarettes and heated tobacco products is also raising potentially lifelong health risks, including lung damage.
• Over 90% of people in the Region breathe air with dangerous levels of pollution, far above WHO safety guidelines.
• Despite the fact that they can often be prevented and treated, CRDs are among the leading cause of disability and death in the Region, particularly as underlying causes of heart disease and cancer. They are currently the sixth-leading cause of death.
• Tools such as lung function testing (spirometry) are often not available and people are often diagnosed wrongly or have delays to getting referrals to specialists. In some countries, healthcare professionals do not receive enough training to be able to spot CRDs at an early stage.
• There are high rates of people living with other conditions and reporting systems in some countries do not always work effectively. This means that sometimes a person’s cause of death is recorded incorrectly, particularly if a person is not being treated for their lung condition. This can hide the true impact of CRDs.
• Patient voices are shared throughout the reporting, highlighting the impact and burden of living with a long-term condition: “My diseases impact my life in every single way, every single day.” Hilary Hodge, living with severe asthma.

What does this report mean for patient organisations?

Patient organisations are called upon in the report to help empower people and communities. The report states:

“Empowering individuals, families and communities to optimize their health, enables them to act as advocates of policies that promote and protect health and well-being, as co-developers of health and social services, and as self-carers and caregivers.”

Patient organisations can support this role by:

• Championing patient advocates in their networks
• Calling for sustained funding and organisational support
• Advocating for patients to have a seat at the table with policymakers
• Producing reliable patient information to help inform patients and enable better shared-decision making
• Ensuring that the voice of the patient remains unbiased when sources of funding may come from industry which can introduce conflicts of interest
• Actively engage in co-design and co-development of people-centered quality healthcare and peer education and support practices

Within the report, examples are shared of patient organisations working in the respiratory field who have championed advancements for respiratory patients across the Region. These include:

• The European Federation of Allergy and Airways Diseases Patients’ Associations gathered insights from asthma and COPD patients across Europe about the future of digital health in their DIG-IT survey.
• The Dutch organisation Longfonds runs a training programme for people living with CRDs to become expert assessors of research proposals that Longfonds is asked to fund.
• Asthma + Lung UK champions equity by leveraging data from its patient passport programme to highlight disparities in care for people with CRDs, particularly those stemming from poor housing and uneven smoking rates.

Objectives of this toolkit

• Raise awareness: ensure the findings of the report reach the widest possible audience, including patients, policymakers, and the public.
• Engage stakeholders: start useful discussions among key stakeholders to address the challenges of chronic respiratory diseases.
• Drive action: encourage tangible steps based on the report’s recommendations for better care, research and policy development.