GlobalSkin’s vision is to strengthen the voice of people living with skin conditions as well as strengthening the voice of the patient organizations who serve them. Wherever you are in the world, skin patients share a struggle to have their conditions taken seriously and to get access to care and treatment. GlobalSkin seeks to address these issues. The unique position of GlobalSkin allows it to:
1. Conduct ground-breaking research on what it’s really like to live with a skin condition around the world – from the perspective of patients. While dermatologists do research using fixed patient-recorded outcome measures (PROMs) like the DLQI, when GlobalSkin speaks to patients directly, their focus is often on issues not currently captured.
2. Improve global advocacy for dermatological conditions. Patient organizations are usually a trusted voice amongst government officials, private payers and the public in their home country. GlobalSkin is actively working to bring to light these issues at a global level, at the UN and WHO.
GlobalSkin is working in regions and countries to provide advocacy training and support, and through its Global Research on the Impact of Dermatological Diseases (GRIDD) project, will provide supportive data to local organizations to improve their advocacy effectiveness.
Most notably, however, the methodology and the results from GRIDD has the potential to influence the DALY measure currently used by the WHO and others to rank the relative impact of disease. Given that dermatological conditions are extremely underrated, the advocacy efforts conducted as a result of the GRIDD project will hopefully present a stark challenge to the DALY ranking system and will prompt a call to not only change dermatology’s relative rank, but also to prompt the WHO to use a similar method in which patients are consulted in all aspects of the project to create a new ranking system. It would be amazing if dermatology patients could pave the way for all marginalized diseases!
3. Raise visibility with disease information and the importance of treatment. GlobalSkin, an unbiased global patient organization, will help raise visibility and provide critical validation of the often-immense impact of dermatological diseases.
4. Change the existing skin disease perception paradigm. Using results from GRIDD and information gathered from patient organizations, GlobalSkin can contribute vastly to the work of changing the existing skin disease perception paradigm.
5. Provide support to all dermatology patient organizations. The key to building a strong patient voice in dermatology is to provide member organizations with education and peer-to-peer sharing of best practices in the form of workshops and biannual member conferences that build capacity and build global campaigns to further important issues. This includes a biennial conference and regular e-learning sessions.
6. Work with stakeholders to share insights into the patient experience. The journey of skin patients is unique and not always well understood. IAD GlobalSkin PO seeks to foster greater understanding of the skin patient journey with industry and payers to improve meaningful access to treatments and programs that truly serve patients.