Patient involvement is a priority for the ELHG, as without structured patient participation in decision-making, the true reality of living with disease is missed in policy interventions and healthcare. Patient involvement needs to be at the start of medicine development, right until the access to treatment and point of care.
People living with lung diseases bring an essential perspective to healthcare, research and policymaking. Their lived experience provides unique insights into the realities of diagnosis, treatment, disease management, quality of life and access to care that cannot be fully captured through clinical data alone.
Involving patients as equal partners leads to better decision-making, more relevant research, improved healthcare services and stronger public health policies. It also helps identify unmet needs, inequalities in access to care, and barriers that may otherwise remain overlooked.
Despite growing recognition of the value of patient participation, involvement remains inconsistent across Europe. Patients are often consulted too late in decision-making processes or are invited to contribute without having a meaningful influence on outcomes. To achieve truly patient-centred respiratory healthcare, patient involvement must become systematic, recognised and adequately supported.
Patient involvement drives patient outcomes
Meaningful patient involvement in all respiratory health policymaking: Patients and patient organisations must be systematically involved in the development, implementation and evaluation of all policies that affect respiratory health. Consultation should take place from the earliest stages of policy design and continue throughout the policy cycle, rather than being limited to ad hoc engagement once decisions have already been drafted. Particular attention should be given to ensuring participation from people living with chronic, rare and complex respiratory conditions, whose perspectives are often underrepresented.
Effective involvement should be based on transparency, mutual respect and accountability, with clear evidence of how patient input has influenced final decisions. Patients should be recognised as partners in decision-making, not solely as consultation participants.
Stronger patient representation throughout research and innovation: Patients should play an active role across the entire research and innovation pathway. Their involvement should begin with setting research priorities and identifying unmet needs, ensuring that research funding addresses issues of greatest importance to people living with respiratory diseases.
Patient representatives should contribute to the design of clinical studies, patient-reported outcome measures, ethical review processes, recruitment strategies and dissemination activities. Their perspectives can help improve research relevance, increase participation, reduce barriers to engagement and ensure that results reflect outcomes that matter most to patients and carers.
A 2022 European Medicines Agency (EMA) study found that patients’ contributions have a tangible impact on the EMA recommendations provided to developers (companies) and in over half of the cases, led to further discussion on relevant patient perspectives.
European research programmes should encourage and support patient involvement as a quality standard for respiratory research and innovation. Research institutions should provide appropriate training and resources to enable meaningful collaboration between researchers and patient organisations.
Patient-centred models of care across Europe: Healthcare systems should be designed around the needs, goals and preferences of patients. Shared decision-making should become standard practice, empowering individuals to participate actively in choices about diagnosis, treatment and long-term disease management.
Patients should be involved in the design and evaluation of healthcare pathways, quality standards and healthcare services. Their experiences can help identify gaps in care, improve coordination between healthcare professionals and ensure that services better address the physical, emotional and social impacts of respiratory diseases.
As healthcare increasingly adopts digital tools and innovative care models, patient perspectives should help guide implementation to ensure accessibility, usability and equity across different population groups.
Sustainable support and recognition for patient organisations: At European, national and regional level, decision-makers should establish formal mechanisms that enable patient organisations to contribute to legislative proposals, public health strategies, disease plans and healthcare reforms. Patient organisations are essential partners in education, advocacy, awareness-raising, peer support and policy engagement. They provide a bridge between healthcare systems and the communities they serve, helping to ensure that patient voices are represented in discussions at every level.
European institutions, governments and healthcare stakeholders should create sustainable frameworks that allow patient organisations to participate consistently and independently in policy and research activities. This includes access to capacity-building opportunities, leadership development, training and appropriate financial support.
Special attention should be given to smaller organisations and those representing rare diseases, which often face significant resource constraints despite representing highly vulnerable patient populations.
Greater patient empowerment and health literacy: Every person living with a respiratory condition should have access to reliable, understandable and evidence-based information that enables them to make informed decisions about their health. Health literacy should be recognised as a fundamental component of high-quality respiratory care.
Patients should be equipped with the knowledge and tools needed to understand their condition, navigate healthcare systems, participate in shared decision-making and advocate for their own needs. Educational materials and communication strategies should be developed with patient input to ensure that they are relevant, accessible and culturally appropriate.
Nearly half of adults in Europe have limited health literacy. In the Health Literacy Survey (HLS19) covering multiple European countries, around 46% of adults had inadequate or problematic health literacy.
People with higher health literacy are more likely to engage in preventive care, manage chronic conditions effectively, adhere to treatment, and achieve better health outcomes. Improving health literacy can contribute to earlier diagnosis, better treatment adherence, improved self-management and reduced health inequalities across Europe.
Integration of patient perspectives in health technology assessment and access decisions: Patients should be involved in discussions on the assessment, reimbursement and adoption of new medicines, medical devices and healthcare technologies. Their experiences provide valuable evidence on the real-world impact of diseases and treatments, complementing clinical and economic evaluations.
Health technology assessment processes should incorporate patient-reported experiences and outcomes to ensure that value is defined not only by clinical indicators but also by improvements in daily functioning, quality of life and disease burden.