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

Denniston, Alastair K; Kale, Aditya U; Lee, Wen Hwa; Mollan, Susan P; Keane, Pearse A; (2022) Building trust in real-world data: lessons from INSIGHT, the UK's health data research hub for eye health and oculomics. Current Opinion in Ophthalmology , 33 (5) pp. 399-406. 10.1097/ICU.0000000000000887. Green open access

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Abstract

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.

Type: Article
Title: Building trust in real-world data: lessons from INSIGHT, the UK's health data research hub for eye health and oculomics
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1097/ICU.0000000000000887
Publisher version: https://doi.org/10.1097/ICU.0000000000000887
Language: English
Additional information: © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (https://creativecommons.org/licenses/by-nc-nd/4.0/).
Keywords: Science & Technology, Life Sciences & Biomedicine, Ophthalmology, artificial intelligence, eye health, Health Data Research UK, INSIGHT, oculomics, patient voice, real-world data, vision
UCL classification: UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10153986
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