Partnerships with patients’ organisations
The ILDS is committed to the inclusion of the patient voice in our work and we collaborate with patients’ organisations across a range of areas.
3 December 2020
Since its inception in 2015, the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) has enjoyed support and encouragement from the International League of Dermatological Societies (ILDS). As early champions, the ILDS helped bring together dermatology patient leaders from around the world to meet and connect on the common challenges patients experience as well as to discuss gaps in treatment and access to care. From this first meeting, GlobalSkin, the global patient-led movement to improve the lives of all dermatology patients, was born.
The ILDS and GlobalSkin have worked to build important connections between dermatology patient leaders and patient-centric dermatologists and other healthcare providers – both through a presence at the World Congress of Dermatology and attendance at GlobalSkin’s patient leader conference.
This effort has continued throughout 2020. GlobalSkin was invited to sit on the ILDS Patients’ Organisations Working Group where patient leaders’ expertise is valued and welcomed. Bringing the patient leader perspective to this distinguished group and working together to benefit patient organisations worldwide demonstrates our collective patient-centric approach.
With the onslaught of the coronavirus pandemic earlier this year, and in-person access to physicians and healthcare providers shrinking due to concerns around the virus, GlobalSkin Members – dermatology patient organisations – became an even more essential resource for dermatology patients. Witnessing this trend, GlobalSkin reached out to dermatology experts through the ILDS and other thought leaders to present its Members relevant and timely information pertaining to the impacts of COVID-19 specific to dermatology patients. The ILDS has contributed to a several webinars, including one on the importance of nurses in patient care and plans are now underway for continued collaboration on webinars benefitting patient organisations in 2021.
In this spirit of collaboration, an opportunity currently exists for dermatologists to further demonstrate their patient-centricity to their patients. GlobalSkin is asking for help to build a new, better, and credible patient-impact measurement tool for dermatological diseases that fully describes patient challenges and validates their need for improved care, better treatment options and more affordable medicines.
Working with the University of Hamburg and Cardiff University, GlobalSkin has launched a novel project called Global Research on the Impact of Dermatological Diseases (GRIDD). This first-ever global patient-initiated ‘impact of skin disease’ research project is expected to have a profound and lasting effect on how policy decisions affecting the care and treatment of dermatology patients are made.
The GRIDD project is currently in Phase 3 – Patient Data Verification Delphi. The Delphi requires that 2000 adult dermatology patients participate by completing two surveys – one now, in December, and the other one month from now.
By sharing information about the Delphi directly with dermatology patients, physicians can ensure that patient experiences from their country and their disease specialties are captured in the data collection. The GRIDD Delphi is taking place from December until mid-January 2021 – learn more by visiting GlobalSkin.org/research or contact email@example.com.
Working together, we can empower and validate dermatology patients around the world.