In 2022, EFA will work alongside the Global Initiative for Asthma (GINA) to further develop patient guidelines for asthma patients and their carers to increase asthma patients’ empowerment for better self-management and adherence to their care. This project is part of EFA’s mission to make the case for tools and resources to create timely, accessible, and patient-centered care and innovation for allergy, asthma and COPD patients in Europe.
Currently, many asthma patients do not feel in control of their disease management. When EFA conducted its ACCESS report, a 2019 survey of 774 asthma and COPD from Finland, France, Germany, Italy, Poland, Spain and the UK on access to prevention, diagnosis, care and empowerment in Europe, we found that one in three asthma and COPD patients do not feel involved in decisions regarding their therapy and lack information about personalised tools for self-management. At the same time, 20% of asthma patients surveyed stated that they have “never heard about” written self-management plans.
To empower asthma patients in handling their treatment, GINA developed evidence-based strategy documents to guide patients on asthma management. GINA is a global organisation launched in 1993 in collaboration with the National Heart, Lung, and Blood Institute, National Institutes of Health, USA, and the World Health Organization. It works with health care professionals and public health officials around the world to produce resources and intitiatives to reduce asthma prevalence, morbidity, and mortality.
The ‘GINA patient guide: you can control your asthma’ is a patient-friendly guide for asthma management with a lot of potential to grow as a resource. However, there still remains a large gap in knowledge and awareness of what patients living with asthma endure each day in their daily lives, as well as for patients in accessing tailored healthcare to meet their needs. There aslo remain needs for different audiences such as children and teenager patients, adult patients, and carers to offer the tailored information they need. Patient information also remains to be updated with new developments, information and references and made available for patients in more languages.
In 2022, EFA plans to work alongside GINA to build on the current information, assess the GINA patient guide and start developing a patient-friendly report based on GINA annual report, which currently only addresses medical audiences. EFA will seek to work closely with GINA and the European asthma patient community to fulfil this project. The end result will be a tool that offers patients and carers accurate and scientific information to keep them up-to-date about treatment plans and options. It will also serve as a tool for healthcare professionals to support their asthma patients and provide them with guidance.
The project will formulate over the course of 2022 to cumulate in 2023. The range of activities will include:
- A survey with patient representatives to identify information needs and gaps in asthma knowledge and education among patients
- A workshop with EFA membership and open to the GAAPP community seeking partnership with GINA to provide useful data to entail discussions with national scientific societies to advocate for the implementation of the guidelines.
- GUIDE Asthma workshop: Asthma Patient Education Today and Tomorrow. Closing the gaps in education resources for asthma patients
- The development of a GUIDE Asthma hub which will support patients with relevant patient-friendly asthma resources from EFA and partners translated into different languages
The results of the project will be launched on World Asthma Day 2023 alongside a communications toolkit and awareness-raising campaign.