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.
30 November 2021
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) embarked on a research journey with the University of Hamburg and Cardiff University in 2017, creating the Global Research on the Impact of Dermatological Diseases (GRIDD) project. This novel patient-initiated research project aims to develop and launch an innovative patient-impact measurement tool: Patient Reported Impact of Dermatological Diseases (PRIDD) which will measure the disease burden across a wide spectrum of skin conditions from a patient perspective.
To date, the GRIDD project has already engaged more than 1200 patients around the world in workshops, interviews and surveys. Currently in Phase 4, the pilot version of PRIDD has been developed with this direct input from patients and is being tested globally by dermatology patients through psychometric testing (surveys) to evaluate how it performs. In November 2021, nearly 500 dermatology patients worldwide took part in the survey. Researchers will now analyse how the measure performed based on the data collection, make any revisions needed and prepare for another round of testing in April/May 2022 across a broad range of dermatological diseases and regions.
Following the psychometric testing next year, the measure will be finalized, culturally adapted, and translated into multiple languages. In early 2023, GlobalSkin plans to officially launch PRIDD to collect dermatology patient impact data across all regions and from as many dermatological diseases areas as possible.
This data will then be used as credible evidence to advocate for better health policies, secure more research and development funding and improve access to treatments and care for patients. This will help to elevate the health prioritization of dermatology and will in-turn benefit specialists (dermatologists, researchers, etc.), patients, patient organizations, industry and others in the dermatology community.
How can Heath Care Providers Help?
GlobalSkin recently co-hosted a webinar with the ILDS, geared towards health care providers (dermatologists and specialists) on “Changing the Way the World Sees Dermatology Through the GRIDD Project”. Expert presenters Jennifer Austin, GlobalSkin, CEO and Rachael Pattinson, GRIDD Researcher, Research Associate & PhD Candidate, Cardiff University were joined by Bill McCue, patient leader and founder of the Pityriasis Rubra Pilaris (PRP) Alliance and Dr. Ramesh Bhat, ILDS Board Member, Vice-Chair of the ILDS Patients’ Organisations Working Group (POWG) and a Member of the GRIDD project’s Scientific Advisory Board for an engaging and informative session.
The webinar provided attendees with a comprehensive overview of the project and explained how the measure will help to collect much-needed patient impact data that will explain what it is truly like living with a dermatological condition. This data will then be used by patient organisations and the broader dermatology community to raise awareness about the impact of dermatological diseases on patients and their caregivers among health policy decision makers and other key stakeholders.
Healthcare providers and specialists can play an important role in the project by sharing information with their patients. We encourage you to help spread the word about GRIDD to ensure the experiences of patients from your region and your disease specialties are captured in this ground-breaking global data collection.
Working together, we can empower and validate dermatology patients around the world.
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance committed to improving the lives of dermatology patients worldwide. GlobalSkin nurtures relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its more than 187 patient association members ─ located in over 62 countries representing more than 54 disease areas ─ to reach more patients, and provide them with greater support, education and advocacy. https://globalskin.org