Global Psoriasis Coalition Meeting in Barcelona Centered on Psoriasis Readiness Index and Policy Priorities for the Upcoming Year
The gathering of members of the Global Psoriasis Coalition took place alongside the 2019 IFPA Members’ General Assembly in Barcelona, Spain, on 8 July 2019. Twenty-six people participated in the meeting, including coalition members, representatives from the International Federation of Psoriasis Association’s (IFPA) Board and Secretariat, representatives from regional psoriasis organizations (Europso, PsorAsia, Latinapso and PsorAfrica) and prospective coalition members.
The conversation kicked-off with the psoriasis readiness index. One of the index’s goals is to help define the attributes of a health system that would be most optimized to provide care for psoriasis, while also measuring the readiness of a selected sub-set of health systems to care for patients with psoriasis. Ideally, the Index would start with four to seven countries, and would launch in Autumn 2020, potentially alongside the regional meetings of the WHO. Participants agreed that the index represents a valuable advocacy tool for the psoriasis community, and indicated that it would be especially valuable if it could be introduced in a way that is complementary to other initiatives already underway in the psoriasis and dermatology space – for example, the index could be paired with the Psoriasis Atlas and the GRIDD project. Members also underlined that national associations should be ready and equipped to leverage the Index’s findings. Recommendations from the Index would also include how to implement and fund a model system. The group concurred that the Index’s workplan should be constructed around interim milestones to create opportunities to release pieces of content throughout the twelve-months leading up to the full launch.
IFPA then debriefed the group about IFPA General Assembly, which took place on 5- 7 July. Elisa Martini and Patrik Vuorio announced the new IFPA Board for 2019-2021, and the themes for World Psoriasis Day for the next three years. They also presented updates on the strategic directions of IFPA, which are: 1) connecting global, regional, and national efforts; 2) advancing psoriasis within the WHO and 3) advancing psoriasis through the NCD community. The Coalition has been instrumental in advancing this workstream in 2019, with the preparation of the Index, the development of a social media campaign on psoriatic arthritis in May, and the white paper on psoriasis and primary health care to be launched at the United Nations General Assembly in September during the Coalition’s side-event.
Next, the members reviewed the Coalition’s policy priorities for 2019-2020, which were defined in consultation with IFPA during the Coalition’s in-person gathering in Washington, DC in March 2019. The conversation revolved around comorbidities, a primary care-led approach, mental health and quality of life, as outlined in the WHO’s 2016 Global Report on Psoriasis. Members welcomed the upcoming white paper on psoriasis and primary care, and shared stories of local successes in strengthening psoriasis care models. Ultimately, participants aligned around the concept of two complementary deliverables: the first, the white paper, will focus on the WHO’s recommendations around psoriatic disease care at the primary care level and will position the Global Psoriasis Coalition as part of the major on-going global policy conversation on primary care, universal health coverage, and the health workforce, while providing valuable context and evidence to support the WHO’s recommendations on psoriasis care. The white paper will include a number of replicable best practices to highlight “what good looks like” and to inspire action by policymakers and advocates alike. A second deliverable will be launched in 2020 to showcase innovations in psoriatic disease care, with the goal of providing tactical guidance and replicable approaches for meeting patients in communities at their first point-of-care and ensuring that they receive an accurate diagnosis and integrated treatment plan.
The meeting closed with a discussion on the preparation for the 74th United Nations General Assembly, detailed in the next article. Overall, the gathering was a success in bringing advocates from around the world together and paves the way for important future milestones for the Coalition.