Research and innovation on medical devices is advancing fast. New technologies are bringing useful self-management devices to the market. Treatment options are also increasing and improving the control of chronic diseases. However, allergic and respiratory diseases are still complex conditions for healthcare professionals: no cure has been found yet, and the mechanisms triggering those diseases are not fully understood.
Patient involvement crucial for progress
At EFA, we believe synergies between patients and researchers are key to understanding, treating and preventing allergies and airways diseases. In recent years, the involvement of patients in research has been widely recognised as beneficial, helping to identify research priorities, reducing the withdrawal rate in clinical trials, and communicating scientific results.
However, much remains to be done in order to make patient involvement in research a consolidated approach in Europe. EFA has a long-lasting track record in participation to research projects.
“U-BiOPRED“ and “My AirCoach” – successful collaborations between patients and researchers
The corner stone in relation to patient input is represented by the EU-funded project U-BIOPRED (Unbiased BIOmarkers in PREDiction of respiratory disease outcomes): EFA and the European Lung Foundation established and coordinated a Patient Input Platform, made of patients with asthma from different EU countries. The impact of the group in the project was impressive, and led to the development of a guide for successful patient involvement (available online).
The experience continued with the “myAirCoach” project: EFA brought on board 20 patients that collaborated with researchers in the development of an m-Health system for the self-management of asthma. The members of the Advisory Patient Forum contributed to the design of the study methodology and of the mobile app, the development of patient information sheets, the sensor devices and finally, testing the entire system.
Language barriers must not affect patients’ access to research findings
EFA considers access to research findings in different languages to be crucial. All research findings can bring benefit to the life of people with chronic diseases. EFA wants those results to be accessible to everybody. Therefore, EFA specialises in leading communication and dissemination activities in research projects, promoting all new discoveries to our audience.
This holds also true for CURE, a project which is proposing a phage therapy that could control the immune dysregulation of asthma and may eventually be able to cure it.