Enhancing INSIGHT Health Data Research Hub - The World’s Largest Ophthalmic Bioresource

Context and Challenge The core mission of INSIGHT is to reduce the burden of blindness by providing safe and trusted access to comprehensive ophthalmic data. Established in 2019 with funding from Health Data Research (HDR) UK, and led by Moorfields Eye Hospital and University Hospitals Birmingham, INSIGHT is now the world’s leading ophthalmic bioresource, with cloud-based data pipelines, world-leading datasets, and clinical and data science expertise. Despite these achievements, the challenge remains to scale this infrastructure across the NHS to create a truly national resource that can support diverse research, improve clinical outcomes, and foster innovation in eye health. Aims and Objectives The primary aim is to enhance and expand INSIGHT to encompass a wider range of NHS Trusts and datasets, thereby transforming it into a national ophthalmic bioresource. Specific objectives include: Scaling INSIGHT Across the NHS: Pilot the onboarding of a partner Trust to create a blueprint for efficient deployment of the ophthalmic data pipeline at additional NHS sites. Develop a comprehensive onboarding pack covering governance, data use, and sustainability. Alignment with NHS Data for R&D Programme: Integrate INSIGHT with the NHS Research Secure Data Environment (SDE) network by becoming an associate member of its Community of Practice. This will ensure that INSIGHT’s infrastructure aligns with national standards for data access and governance. Enhancing National Linkages to Facilitate “Oculomics”: Upgrade the AlzEye cohort to an “evergreen” state, enabling continuous growth and extended follow-up. Expand linkages with other national datasets and make the expanded database more widely available to researchers. Integrating Genetic Data: Link the Moorfields NIHR BioResource and UK Biobank with INSIGHT to combine genetic data with ophthalmic imaging and clinical data. This will facilitate new insights into disease mechanisms, help AI-assisted drug discovery, and enable personalised treatments. Public Trust and Equity: Enhance public trust and ensure equity by developing inclusive governance frameworks, delivering point-of-care messaging, and leading a national “Data Saves Sight” campaign. Address equity risks associated with AI in eye health and engage with underserved communities to ensure diverse representation. Potential Applications and Benefits The expanded INSIGHT platform will offer significant benefits for clinical research, patient care, and public health. By providing a comprehensive, interoperable resource for ophthalmic data, the project will: Facilitate Advanced Research: Enable researchers to access large-scale, high-quality datasets, supporting studies on disease mechanisms, treatment outcomes, and AI-driven diagnostics. Improve Clinical Outcomes: Use linked datasets to enhance clinical audit and service planning, improving the quality and efficiency of NHS eye care services. Foster Innovation: Support the development of new diagnostic tools and therapeutic strategies, leveraging AI to advance precision medicine in ophthalmology. Ensure Data Equity: Address “health data poverty” by ensuring diverse and representative datasets, thus improving the generalizability and fairness of research. Engage and Inform the Public: Strengthen public trust through transparent data governance and proactive engagement, demonstrating the societal value of health data. Conclusion The proposed project aims to transform INSIGHT into a national resource that integrates ophthalmic data from across the NHS. By aligning with national data infrastructure initiatives, scaling to additional NHS sites, enhancing data linkages, and ensuring public trust and equity, this project will consolidate the UK as the world leader in ophthalmology and vision science, and significantly reduce the burden of sight-threatening eye disease, both in the UK and globally.