Given the impact of respiratory disease in Europe, we should be at the forefront of research in respiratory health. The Breathe Vision for 2030 strongly advocates for an increased commitment to investment in research to tackle the complexity and the slow speed of treatment development.
While Europe is at the forefront of health research, more efforts and support are needed in researching lung health to sustain the increase in understanding and to find the major new treatments that have been missing for the past 50 years in COPD and Asthma. Leveraging digital health and technological opportunities, sharing data and analysis more widely and creating frameworks that deliver faster results can help make real advances in lung health treatment.
Better resourced innovative and efficient research
Strengthening research capacity: Europe should remain a global leader in respiratory research. Long-term investment is required to support basic science, translational research, clinical trials, real-world evidence generation and the development of innovative therapies and medical technologies. Patients should be actively involved throughout the research process to ensure that innovations address real-world needs.
Patient priorities are put at the centre of research: Patient priorities should set the agenda for research. Broad-based patient input on funding decisions becoming the standard across Europe in order to reflect the changes lung patients want to see in their lives. P atients should also participate in steering committees for research projects for the life course of each project.
Clinical trials are made more efficient: The wide range and scale of respiratory disease demand more innovation and these innovations to be spread widely. This includes better clinical trial design, real world trials to support the development of interventions, digital clinical trials handling large amounts of data and novel platform trials which better identify which treatments work for which patients. In addition, new approaches are needed to get more lung patients participating in clinical trials. To help push research further and faster, a stronger focus on academic input and independent clinical trials is also needed together with an overhaul of pharmacological regulation that impacts patients.
Advancing treatments towards a cure: Respiratory health has traditionally been underfunded compared to other diseases. This important given its impact on the health of Europeans. A simple matter of more resources is important for protecting and dealing with the health and socio-economic impacts of respiratory disease. Situations like the lack of breakthroughs in treating COPD and asthma over the last 50 years need to be addressed, respiratory disease remains the 3rd leading cause of death worldwide . More research, incentivized to find effective treatments, will bring us closer to cures and we should have clear orphan drug type incentives. Better treatment regimens are also needed for infectious diseases, such as tuberculosis where long, complex, and outdated treatments with severe side effects are still being used.
Coherent frameworks are in place for discovery and care improvement: Money alone will not solve all the problems. Working together should be supported, ensuring that the power of the collective is harnessed in a structured and meaningful way. Research partnerships should see fundamental changes in the depth and level to which working together is achieved, with a focus on strategies to reduce the cost of drug development. Data and data gathering should be better managed and shared more widely, leveraging enabling technology to analyse multiple datasets to better understand the complexity of respiratory disease. Patients need to be happy that their data is being properly used to facilitate better care and research. Rare disease legislation revision should be revisited, and improvements proposed. These frameworks should also focus on patients adhering to treatment and practicing prevention measures.
Environmental health science and epidemiology are leveraged: A research focus dedicated to environmental health and focused on risk and prevalence should identify the scope of the challenges. This focus should be on both infectious diseases, such as tuberculosis, and non-infectious diseases, such as asthma and COPD. This approach should ensure a balanced health policy response, minimising crisis management. Research on the short and long-term impacts of new smoking products should be supported to better understand their impact, as well as indoor environmental pollution and risks to respiratory health in the workplace
For many lung diseases, recorded hospital admissions and deaths are only the “tip of the iceberg”
Digital technology is harnessed to drive change: Technology should be used to encourage and exploit respiratory partnerships and deliver step changes for the patient experience. Tools like artificial intelligence (AI) and computer modelling can make both research and clinical trials more efficient provided they are adopted. New technologies should be embraced, and their adoption should not be hindered. Digital technologies should also be leveraged to enable better diagnosis and self-management, including recognising machine learning to improve early diagnosis and patient sensitive use of AI.
Innovation is fostered through registries and biobanks: Our understanding of respiratory disease should be deepened by using registries and biobanks to share non-sensitive information more widely and effectively, and by creating a joint coding approach across Europe to enable data sharing. A movement towards respiratory registries and biobanks should also enable us to have more European lung patient cohorts and clinical trial networks.
New drugs get to patients’ faster: The innovation and regulatory pipeline should work more efficiently, including getting more lung patients to participate in and design clinical trials, accelerating progress with new ideas.. Drug repurposing should receive more attention, using existing solutions where they are effective. New drugs would be quality drugs with fewer side effects. When new treatments are available, they need to be licensed and approved across Europe rapidly if their benefits are to be fully realized. This has not always been the case, notably with newer treatments for TB recently.
Accurate European wide respiratory health data is developed: Much of the data we rely on is old – sometimes as much as 10 years old – while other data is not collected or not released at a national level. Reliable data on prevalence and the burden of respiratory disease is vital to better quantify the problem and to focus our response. This should be complemented by patient stories and experiences which show what this data means.
Whole care genetics and whole-body approach: Diseases continue to be seen in siloes, despite a number of good initiatives. This approach is reflected in the genetic field as well as in clinical trials. A whole-body approach should be taken as a starting point for all research to better understand the interlinked functioning of organs and co-morbidities and to ensure faster progress in finding cures. The transition from child to adult care would form part of this approach, as would the link between infections and chronic disease.