6 December 2023
Chronic Obstructive Pulmonary Disease (COPD) is a complex chronic condition, characterised by exacerbations that have an impact on the disease progression and patients’ quality of life.
The TOLIFE project aims to develop a clinically validated Artificial Intelligence (AI)-based platform to predict early exacerbations of the disease, and be the base to optimise personalised treatment, assess health outcomes, and improve quality of life.
Within Work Package 1 (WP1), the European Federation of Allergy and Airways Diseases Patients Associations (EFA) is responsible for establishing and managing a Patient Advisory Group (PAG). EFA facilitates the discussion between patients’ experts and researchers and oversees feedback and indications from both patients and caregivers regarding the perceived invasiveness, privacy impact, usefulness and safety of the technology.
TOLIFE PAG: background and role
The Patient Advisory Group, or PAG, consists of patients, caregivers or patient advocates with a keen interest, expertise or experience related to the disease, its treatment or research under discussion. Within the TOLIFE project, the PAG is composed of approximately 10 members from various parts of Europe who are experts in the field of COPD. The PAG members meet regularly with the TOLIFE researchers and clinicians to ensure that the collaborative research project reflects patients’ priorities. In TOLIFE, the PAG is responsible for several key functions:
- Ensuring a patient-centric approach
- Ensuring COPD management models address patients’ needs
- Delivering tangible outcomes for COPD patients
The TOLIFE PAG works across different WPs, in a consultative role, providing essential input on patient priorities, data collection, study design, and dissemination. Through their continuous feedback, the PAG members established a strong relationship with the TOLIFE consortium, providing continuous feedback on the development of guidelines, sensors, and evaluation tools for the project. This ensures not only the inclusion of the patients’ perspective across the project, but also that the COPD management models will address patients’ needs and will be understandable for its lay target group.
The Patient Advisory Group is a precious resource and guidance in the TOLIFE project to ensure the project maintains a patient-centric approach for its whole duration.