PCP7 - The European ADPKD Forum (EAF): Translating Science into Policy to Improve ADPKD Patient Care in Europe

Abstract

To demonstrate the long-term impact of implementing an international, multidisciplinary, expert working-group; dedicated to translating scientific and clinical advances into policy, to improve health and quality of life of people living with autosomal dominant polycystic kidney disease (ADPKD). Between 2013-2018 leading patient advocates, healthcare professionals and academics, representing nephrology, hepatology and genetics, have come together as the EAF, to develop policy-focused approaches to address unmet needs in ADPKD care in Europe. Focusing on low-level disease awareness amongst policymakers, practitioners and payers; variations in care; and absence of approved treatment options; the EAF has engaged with patient advocacy organisations and professional society representatives through publications, multi-stakeholder policy-events, conference activities, media releases (press, social, video), targeted communications and advocacy toolkits. The EAF Report and Brussels Declaration on ADPKD (co-published with PKD International and EGAN. 2015) provides strategic, policy-focused recommendations empowering stakeholders to become active partners in healthcare, policymaking, service design and research. Endorsed by 32 national and international societies they informed multiple national ADPKD collaborations. The Multidisciplinary Position Statement on ADPKD Care (Nephrol Dial Transplant. 2017) advocates for holistic patient-centered care services, referencing EU policy initiatives and achieving strong impact metrics. The ADPKD Patient Route Map (2018) enables patients to navigate their ADPKD services and provides checklists for self-management enhancing shared and informed decision-making. The EAF has provided a collaborative platform for clinical experts and patient advocates to raise awareness and develop impactful policy-focused recommendations, together with communications and tools designed to improve real-world patient care and empower patients. Multi-sector and multi-channel outreach has aided impact across clinical, academic, patient and policy-making communities. Advances in ADPKD services have included establishment of additional specialist centers and the European Reference Network for Rare Kidney Diseases, both advocated for by the EAF Report. However, variations in ADPKD services remain across Europe and warrant further work.