Understand better our patients and their needs, and how they differ across Europe.
Increase patients’ involvement and public awareness, identify unmet needs and how we can support patients better.
Help other players (e.g. industry, national health systems) better support glaucoma patients.
Activities:
Map presence of patient organizations in Europe.
Understand level of support by patient organizations in each country.
Plan surveys/ interactive sessions to receive measurable and structured feedback by patients on clinical care and treatment.
Help create European-wide structured patient communication channels, with EGS acting as an umbrella.
Achievements:
Patient Event in Athens EGS 2022 conference with a panel in which patients and clinicians discussed glaucoma care.
EGS Patients Glaucoma Survey. Distributed in 24 countries in 11 languages. 3002 answers were collected.
Survey results have been presented in AGS 2023, WGC 2023 (accepted posters) and final results will be presented in EGS Members meeting 2023.
Joint workshop in Lisbon in September 2022 with EGS Research priorities committee with the participation of 8 patients from around Europe. Patients worked on prioritising the future glaucoma research priorities, facilitated by clinicians and a clinical psychologist. Paper for this work submitted for publication.
Set up of the first Expert by Experience Glaucoma Committee in the world (to the best of our knowledge) in which only glaucoma patients participate and will work on important issues for glaucoma patients.
