INSIGHT: The Health Data Research Hub for Eye Health

Lead Research Organisation: University Hospitals Birmingham NHS Foundation Trust
Department Name: UNLISTED

Abstract

"There is an increasing demand for ‘Big Data’ to enable innovation in health technologies and improve patient care. INSIGHT-DIH creates an NHS-academic-industry partnership to make anonymised datasets accessible and provide critical services that respond to user needs (patients/industry/other), including ‘real-world evidence’ and ‘smart’ clinical trials for new drugs or devices, and accelerating AI-algorithm development for the NHS and beyond.
INSIGHT-DIH is focused on eye disease and its application to wider health, including diabetes C19and dementia. INSIGHT-DIH turns routine eye imaging - currently >25million/yr (UK)- into an exceptional asset for innovation as a convenient, uniquely valuable health snapshot.
INSIGHT-DIH uses anonymised large-scale data and advanced analytics to bring new clinical insights: from detection, diagnosis and referral, to new treatments and personalised healthcare. INSIGHT-DIH unlocks this opportunity by pairing unique anonymised data assets to hubs of expertise where patients and clinicians can, with industry, more efficientlyexplore the safety and use of new AI systems. This will accelerate the pace with which AI is able to translate to real patient benefit for the NHS and accelerate innovation across all sectors."

Technical Summary

"T he INSIGHT Digital Innovation Hub (INSIGHT-DIH) focuses on Eye Disease and ‘Oculomics’ , a first-of-its-kind linkage of routinely collected, anonymised high-dimensional eye-imaging data from the major ocular diseases impacting blindness to wider health including diabetes, dementia, cardiovascular disease and inflammation/immunity . INSIGHT-DIH partners NHS (University Hospitals Birmingham NHSFT, Moorfields Eye Hospital NHSFT), charities (Action Against Age-related Macular Degeneration) and industry (Roche, Google), to enable innovation and transform patient care.
Eye/vision problems affect 1.3 billion people worldwide but is highly amenable to digital innovation. In particular, ocular imaging can be used to provide novel insight into both eye and systemic health (“oculomics”), from childhood to old age. The INSIGHT-DIH network gathers data from across the whole of the UK health sector - NHS clinics, imaging diagnostics, laboratories, primary care/optometry – which will be linked and anonymised within the DIH to build the first holistic data-record combining routine systemic and eye health data with unparalleled high-order retinal imaging centred on patient benefit.
This positions the INSIGHT-DIH as an ideal exemplar for making the NHS ‘AI-ready’ . Eyecare data is standardised, large-scale (10% of all NHS appointments; >25 million scans/yr), and with proven suitability for artificial intelligence (AI) health applications (e.g. automated retinal diagnosis).
INSIGHT-DIH will support innovation, making existing inaccessible datasets discoverable , and bringing scale and efficiency to dataset aggregation and curation of anonymised routinely collected data , utilising our existing UK network.
We will address the ‘implementation gap’, with NHS partners being accelerated in digital maturity to AI-ready work-flows.
Disease-focused image-linked datasets respond to NHS/industry needs and DIH priorities:
(1) diabetes and diabetic eye disease;
(2) age-related macular degeneration ;
(3) dementia;
(4) community cohort for AI-intervention development/evaluation to improve screening and access to care.
Datasets will be scaled towards national coverage.
Additional services include: rapid-response real world evidence (RWE); ‘smart clinical trial’ capability for pharmacological/device/AI-interventions; and ‘clinical/technical Faculties’ of domain experts.

INSIGHT-DIH is underpinned by public trust and co-development, with a further £1 million investment in public and patient involvement and engagement (PPIE) as part of this bid, and creation of a Data Trust (Open Data Institute; AAAMD). From first contact to project completion, we will ensure excellence in service, with a view to sustainable partnerships, value return to all parties and a transformation in patient care."

People

ORCID iD

Publications

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Agarwal A (2020) Imaging in Tubercular Choroiditis: Current Concepts. in Ocular immunology and inflammation

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Anguita R (2020) Multimodal imaging of a vascularized idiopathic epiretinal membrane. in European journal of ophthalmology

 
Description Appointed to UK Government's Regulatory Horizons Council - Independent advice on areas of regulatory reform which will support innovation
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact Advise government on priorities for regulatory reform that supports innovation whilst protecting citizens; first reports include medical devices and nuclear fusion.
URL https://www.gov.uk/government/groups/regulatory-horizons-council-rhc
 
Guideline Title CONSORT-AI
Description CONSORT-AI - International Guidelines for Reporting of Clinical Trials for AI Interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
Impact Improving design and reporting of AI interventions, for safer more effective more inclusive AI interventions.
URL https://www.nature.com/articles/s41591-020-1034-x
 
Description Contribution to national CASMI report on Health Data, the NHS and the UK
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact Realising patient and NHS benefits from health and care data - from policy to practice Informing the discussion and increasing trust
URL https://acmedsci.ac.uk/file-download/73707502
 
Guideline Title SPIRIT-AI (Equator guidelines)
Description SPIRIT-AI _ International Guidelines for Reporting of Clinical Trial Protocols of AI Interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
Impact Guidelines to inform the design and reporting of the design of clinical trials in artificial intelligence systems.
URL https://www.nature.com/articles/s41591-020-1037-7
 
Description Artificial Intelligence for Missing Data Imputation in Electronic Medical Records
Amount £10,312 (GBP)
Funding ID NE/T013982/1 
Organisation Natural Environment Research Council 
Sector Public
Country United Kingdom
Start 04/2020 
End 03/2021
 
Title Birmingham, Solihull and Black Country Diabetic Retinopathy Screening Set 
Description Routinely collected data of latest regional diabetic screening service in the UK 
Type Of Material Database/Collection of data 
Year Produced 2020 
Provided To Others? Yes  
Impact Supports discovery, real world evidence and development/validation of AI systems. 
URL https://web.www.healthdatagateway.org/dataset/36886b21-12ff-45e7-82bc-fb5308c12450
 
Title INSIGHT Databases 
Description 10 Databases 
Type Of Material Database/Collection of data 
Year Produced 2022 
Provided To Others? Yes  
Impact Available for researchers 
URL https://www.insight.hdrhub.org/datasets
 
Title Moorfields AMD Dataset Release 002 
Description World's largest AMD linked structure-function dataset with longitudinal data of over ten years. 
Type Of Material Database/Collection of data 
Year Produced 2021 
Provided To Others? Yes  
Impact A number of active studies, including impact of anti-VEGF therapies. 
URL https://web.www.healthdatagateway.org/dataset/bf392537-82b4-4d71-ace0-e7bea3b167fb
 
Title Moorfields Eye Image Dataset Release 001 
Description World's largest single centre ophthalmic imaging dataset 
Type Of Material Database/Collection of data 
Year Produced 2020 
Provided To Others? Yes  
Impact Multiple ongoing projects for discovery and real world evidence, including impact of diabetes on AMD. 
URL https://web.www.healthdatagateway.org/dataset/6bfe44ef-9532-4986-b8a2-9c2cda4a89cc
 
Title UHB Eye Image Dataset Release 001 
Description Exceptional eye imaging dataset from a diverse urban population in Birmingham 
Type Of Material Database/Collection of data 
Year Produced 2020 
Provided To Others? Yes  
Impact Can support real world evidence, biological discovery and validation of AI diagnostics. 
URL https://web.www.healthdatagateway.org/dataset/21fb56d1-726f-40e3-a998-e4b34ba3e46f
 
Description International ophthalmic data standards 
Organisation American Academy of Ophthalmology
Country United States 
Sector Charity/Non Profit 
PI Contribution Consensus for international standards for ophthalmic imaging data - co-leadership with INSIGHT and the AAO representatives
Collaborator Contribution Consensus for international standards for ophthalmic imaging data - co-leadership with INSIGHT and the AAO representatives
Impact Published - AAO statement Pending - RCOphth statement In planning - data collection study, and a grand challenge
Start Year 2020
 
Description International ophthalmic data standards 
Organisation Royal College of Ophthalmologists
Country United Kingdom 
Sector Academic/University 
PI Contribution Consensus for international standards for ophthalmic imaging data - co-leadership with INSIGHT and the AAO representatives
Collaborator Contribution Consensus for international standards for ophthalmic imaging data - co-leadership with INSIGHT and the AAO representatives
Impact Published - AAO statement Pending - RCOphth statement In planning - data collection study, and a grand challenge
Start Year 2020
 
Description AI Ethics Launch - NHSX Panel 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk on Health Data Poverty, and impact of routinely collected data to over 300 attendees followed by a panel discussion
Year(s) Of Engagement Activity 2021
 
Description Big Picture Podcast - INSIGHT and Health Data Poverty 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Regular podcast featuring leaders in medicine. We discussed AI, health data research and the role of INSIGHT in addressing health data poverty.
Year(s) Of Engagement Activity 2020
URL https://podcasts.apple.com/gb/podcast/big-picture-medicine/id1500446262
 
Description Bloomsbury Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Bloomsbury Festival 2020 - online due to pandemic; 21200 website visitors; 32000 audience of which 3500 were for digital events, 15000 for radio
Year(s) Of Engagement Activity 2020
 
Description INSIGHT website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Development of INSIGHT website
Year(s) Of Engagement Activity 2020,2021
URL https://www.insight.hdrhub.org
 
Description Insights from INSIGHT 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Series of podcasts - 'Insights from INSIGHT'
Year(s) Of Engagement Activity 2020
 
Description NIHR BRC Patient and public group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Presented to broad groups of public and patients on 8 different occasions through the NIHR BRC through 2020.
Year(s) Of Engagement Activity 2020
 
Description Westminster Health Forum - Regulation including Data 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Talk on 'Navigating the changing research landscape'
Panel as part of Trust and Transparency
Year(s) Of Engagement Activity 2021
URL https://www.westminsterforumprojects.co.uk/conferences/westminster-health-forum