Clinical tests can show whether a treatment is working, but they do not always capture how people living with long-term conditions feel in their daily lives. This question was at the heart of a patient roundtable hosted by the European Lung Foundation (ELF) during the 3TR project 7th annual meeting in Sardinia, Italy.
The 3TR project brings together researchers, healthcare professionals and patients to improve understanding of treatment responses for seven diseases linked to immune function, inflammation and allergies, including asthma and COPD (chronic obstructive pulmonary disease).
The roundtable brought together patient representatives, researchers and other partners to explore how treatment outcomes are defined and measured across different diseases, and how ‘patient-reported outcomes’ (patients’ own experiences of how well treatments are working for them) can help ensure research focuses on what matters most to people living with long-term conditions.
Patient play an important role in the 3TR project. ELF and the European Federation of Allergy and Airway Diseases Patients Associations (EFA) set up the 3TR Respiratory Patient Advisory Committee (PAC), made up of over 30 people with lung conditions who provide advice throughout the project on the activities in asthma and COPD. ELF also supported the involvement of patients from the project’s other disease areas, creating a diverse group of contributors across all seven conditions.
The roundtable brought together representatives from all seven disease areas to discuss how treatment outcomes are defined and measured. A key focus was the role of patient-reported outcomes, which capture patients’ experiences of treatment and can help determine whether treatments make a meaningful difference in people’s lives.
Participants discussed ongoing work to:
A key message emerged across all disease areas: clinical remission does not always mean patients feel well.
Patients highlighted that symptoms such as fatigue, pain and brain fog can continue to affect daily life even when clinical indicators suggest a condition is under control. Discussions explored how these experiences can be captured more effectively in research and care.
A moderated discussion centred on a case study on multiple sclerosis, with a scientist presenting ways of measuring disability and disease progression, including the Expanded Disability Status Scale (EDSS), and a patient representative highlighting the patient perspective on meaningful clinical outcomes and remission.
Researchers also shared updates on efforts to improve the measurement of patient outcomes. This included the Core Outcome Measures Sets for paediatric and adult Severe Asthma (COMSA), which aims to establish agreed outcome measures for future asthma research and clinical trials, making it easier to compare results across studies.
A presentation titled ‘Cross-disease patient-centric outcomes: towards a common framework for meaningful clinical outcomes’ explored whether a common framework for meaningful clinical outcomes could be developed across diseases. Patient representatives from different disease areas offered reactions and reflections, sharing both the similarities and differences in their experiences.
The discussion highlighted opportunities for shared learning and collaboration across disease areas, while recognising that patients may define treatment success and remission in different ways.
ELF Director Pippa Powell, who hosted the roundtable, said:
“It was fantastic to have patients from all disease areas present. They were welcomed and engaged in all sessions. The project has started to really look at analysis of patient outcomes that can be done across diseases, how these can be used, and their commonalities and differences.”
ELF will continue supporting patient involvement in 3TR, helping ensure that patient perspectives shape research priorities, project outputs and the communication of results.
Learn more about the 3TR project at the website: The 3TR project.
