Towards universal palliative care in Ireland: Scoping decision-makers' needs for an Atlas of Variation data mapping tool

Abstract

Background: Despite Ireland’s longstanding commitment to a national, universal system of palliative and end-of-life care (EoL), prior research has found inequitable variation geographically in provision and access to services, and a need for better data to inform planning in this area. This study investigates data priorities and feasibility of developing an Atlas of Variation data visualisation tool for palliative and end-of-life care in Ireland from the perspective of key stakeholders working across the system. Methods: Drawing on a review of international atlas methodologies and semi-structured interviews with 17 stakeholders, including policymakers, service providers, service model/delivery experts, and data infrastructure experts, the research identifies key system level barriers and enabling factors to development of an atlas of variation for palliative care/EoL for Ireland. Findings: Interview participants highlighted fragmentation of data sources, limits to interoperability and harmonisation, regulatory barriers, and an institutional culture that has yet to fully embrace evidence-based service planning and policymaking as key challenges. Existing strong stakeholder networks, analytic capacity, and consistent political will were identified as enablers. Conclusions: Foreit and colleagues’ Data Demand and Information Use (DDIU)framework frames the discussion of the findings, underscoring the importance of considering non-technical aspects of health information systems, and the cyclical, interdependent nature of the evidence-based decision-making process in palliative care and in healthcare more broadly. The research has important implications for other jurisdictions with similar data infrastructure constraints seeking to use health data visualisation tools to enable more equitable service planning and delivery.