Building trust in real-world data: lessons from INSIGHT, the UK's health data research hub for eye health and oculomics

Purpose of review In this review, we consider the challenges of creating a trusted resource for real-world data in ophthalmology, based on our experience of establishing INSIGHT, the UK's Health Data Research Hub for Eye Health and Oculomics. Recent findings The INSIGHT Health Data Research Hub maximizes the benefits and impact of historical, patient-level UK National Health Service (NHS) electronic health record data, including images, through making it research-ready including curation and anonymisation. It is built around a shared 'north star' of enabling research for patient benefit. INSIGHT has worked to establish patient and public trust in the concept and delivery of INSIGHT, with efficient and robust governance processes that support safe and secure access to data for researchers. By linking to systemic data, there is an opportunity for discovery of novel ophthalmic biomarkers of systemic diseases ('oculomics'). Datasets that provide a representation of the whole population are an important tool to address the increasingly recognized threat of health data poverty. Summary Enabling efficient, safe access to routinely collected clinical data is a substantial undertaking, especially when this includes imaging modalities, but provides an exceptional resource for research. Research and innovation built on inclusive real-world data is an important tool in ensuring that discoveries and technologies of the future may not only favour selected groups, but also work for all patients.

Automated summary

This review discusses the challenges of creating a trusted resource for real-world data in ophthalmology, using the UK's INSIGHT Health Data Research Hub as an example. INSIGHT utilizes historical patient-level electronic health record data, including images, to enable research and maximize patient benefit. The establishment of patient and public trust, efficient governance processes, and the potential for discovering ophthalmic biomarkers of systemic diseases are highlighted.