Harnessing Routinely Collected Health Data for Global Monitoring of Stroke: Roadmap and Vision for INSPIRE-STROKE.

Abstract

Introduction: Sustainable and low-cost data systems for national and global surveillance of stroke are urgently needed to address the growing burden of stroke. Routinely collected health data (including registries and administrative data) are proliferating at a rapid pace, offering promise for systematic and enduring global stroke surveillance. However, several challenges exist in utilising these routinely collected data from across the globe for global stroke surveillance, such as non-standardised definitions and coding, missingness of data, and lack of transparent or reproducible methods. We aim to describe the vision and methods for a new global collaboration to leverage and harmonise population-level health data for global stroke surveillance.

Methods: The International Network for Standardised Population Insights and Real-world Evidence for STROKE (INSPIRE-STROKE) was established in October 2023 and currently includes 39 collaborators from 16 countries. The vision of INSPIRE-STROKE is to develop new methods that will harmonise and combine health databases across the world to facilitate reliable and robust multi-country stroke surveillance. Through this scientific community, we are initially collaborating to 1) summarise existing methods for calculating and reporting measures of post-stroke outcomes using routinely collected health data; 2) develop consensus-based standards for analysing routinely collected health data on post-stroke outcomes; and 3) conduct proof-of-concept studies to align variables/definitions in routinely collected health data and create standardised statistical code to measure post-stroke outcomes (e.g., medication adherence, readmissions, and mortality) according to consensus-based definitions.

Conclusion: INSPIRE-STROKE will support more reliable investigations into country-level trends in stroke incidence and outcomes, by leveraging routinely collected health data at a global scale. The large and diverse data compiled for INSPIRE-STROKE could facilitate exploration of rare stroke outcomes, particularly among under-represented groups (e.g., pregnant women, children). INSPIRE-STROKE will strengthen health policy and resource planning by providing high-quality evidence to improve access to stroke care and maximise patient outcomes.