Working towards a national End Stage Kidney Disease Data System for Ireland

<ns3:p>Aims/Objectives This project proposed a framework to develop a national End Stage Kidney Disease (ESKD) data system in Ireland by exploring the core needs and design features from a diverse set of stakeholders. The objectives were to assimilate the perspectives and opinions of patients, clinicians, healthcare planners and researchers, and achieve consensus on priority features, data infrastructure and governance. Methods A structured design approach guided the consultation process. Two multi-stakeholder workshops were convened using a Design Thinking process to capture key issues and prioritise needs. Participants were clinicians, patients, researchers, policymakers, and technical experts. A multi-stakeholder summit provided opportunities to discuss the technical and governance aspects, patient/public involvement (PPI), ethical considerations, and share experiences with national and international experts. Key outputs addressed stakeholder needs with the production of a strategic roadmap for the ESKD data system. Benefits/Results The Design Thinking process identified key requirements from all stakeholder groups. Patients prioritised real time access to personal data and treatment information; clinicians emphasised integration with existing systems; health planners asked for standardised quality indicators and geographic service mapping and researchers stressed the need for accessible data. The summit refined these needs and proposed the establishment of 3 working groups to prioritise technical development, governance, and patient and public involvement. Conclusions/Next Steps The stakeholder engagement process successfully identified core requirements and governance priorities for a national ESKD data system. The creation of individual workstreams to inform system design and operationalise these requirements are the next steps in this process.</ns3:p>