Resources

Here you will find resources related to the INSIGHT Health Data Research Hub, including factsheets to download, videos and podcasts, and links to external sites related to data and eye health. For researchers, there are also links to academic papers from members of the INSIGHT team.

On this page:

Resources for patients and the general public

Factsheets (coming soon)

About INSIGHT and your data
INSIGHT governance and the Data Trust Advisory Board
Research using INSIGHT data
The new science of ‘oculomics’
Your data, your choice: NHS patient consent
INSIGHT’s diverse datasets: Birmingham and London

External links

INSIGHT is part of Health Data Research UK (HDR UK). Here are some useful links to their websites:

Eye health

If you are looking for information about eye health, the following links may help. You can also find comprehensive information about a wide range of eye conditions on the main NHS website.

Information about eye conditions from Moorfields Eye Hospital
Patient information leaflets from University Hospitals Birmingham
Eye health information from the RNIB
Top ten sight loss and vision priorities established by the James Lind Alliance Priority Setting Partnerships
Rare eye disease: share data for research with MyEyeSite

Glossary of terms for INSIGHT

Anonymised data

This is data where the pseudonymised code (see below) has been replaced by a random number, so that it is virtually impossible to link that data back to an individual patient. In some cases (for example, with extremely rare conditions) it could be possible to re-identify an individual from their anonymised data. To avoid this, INSIGHT will ensure that data susceptible to being re-identified is removed from any datasets before they are made available for research.
- Find out more about keeping data safe on the Understanding Patient Data website

Pseudonymised data

This is data which has had identifying details (such as name and address) replaced by a unique code. Pseudoynmised data is not shared, but is instead held in a secure environment, accessible only by accredited INSIGHT staff. If necessary, an individual's data can be identified using their unique code – for example, if a patient decides to opt out of sharing their data for research purposes.

HDR UK

Set up by the government through, HDR UK is an independent, non-profit organisation. Its work spans academia, healthcare, industry, charities, plus patients and the public. Its staff include some of the world’s leading experts in health data research and innovation, working together to develop and apply cutting-edge approaches to clinical, biological, genomic and other multi-dimensional health data to address the most pressing health research.
- Find out more on the HDR UK website

Health Data Research Alliance

Convened by HDR UK, this is an alliance of leading health, care and research organisations in the UK, united to establish best practice around the ethical use of UK health data for research and innovation at scale.
- Find out more on the UK Health Data Research Alliance website

HDR UK Innovation Gateway

This is a web portal that allows users to discover, and enquire about access to, UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population and the legal basis for access.
- Find out more on the HDR UK Innovation Gateway website

Data Controller

A Data Controller determines the purposes for which, and the manner in which, personal data is processed. In the case of INSIGHT, the Data Controllers are the two NHS parters, Moofields Eye Hospital NHS Foundation Trust (MEH) and University Hospitals Birmingham NHS Foundation Trust.
- Find out more about the use of data by MEH and UHB

Data Processor

A Data Processor is responsible for processing personal data on behalf of a Data Controller. Data Processors have specific legal obligations and are required to maintain records of personal data and processing activities. In the case of INSIGHT, Google Cloud acts as the Data Processor.

Google Cloud

Cloud computing makes computer system resources available to individuals and organisations on demand, especially data storage (cloud storage) and computing power. Like other 'clouds', Google Cloud is set of physical assets, such as computers and hard disk drives, and virtual resources that are contained in Google's data centres around the globe. This distribution of resources provides several benefits, including redundancy in case of failure.
- Find out more on the Google Cloud website

Google Shared Virtual Private Cloud (VPC)

The Shared VPC provided by Google allows INSIGHT to connect resources from multiple projects to a common Virtual Private Cloud (VPC) network, so that different parts of INSIGHT can communicate securely and efficiently. It allows INSIGHT to implement a security best practice of ‘least privilege’ for network administration, auditing, and access control – this means each part of INSIGHT can only access the information it actually needs.
- Find out more on the Google Cloud website

Trusted Research Environment (TRE), also known as a ‘Safe Haven’

TREs are designed to protect the privacy of individuals whose health data they hold while facilitating large-scale data analysis using High Performance Computing that increases understanding of disease and improvements in health and care.
- Find out more on the HDR UK website

The ‘Five Safes’

This is a framework for helping make decisions about making effective use of data which is confidential or sensitive. The Five Safes are: Safe Projects; Safe People; Safe Settings; Safe Data; and Safe Outputs. They were divised by the UK Office for National Statistics to ensure that personal data is used safely and that the analysis of data for research does not result in the identification of individuals.
- Find out more on the UK Data Service website

Resources for researchers

Here we list a selection of academic papers and research projects from the INSIGHT team and others that apply advanced analytics, including ariticial intelligence, to various eye health data. All links are to external sites.

A list of papers related specifically to INSIGHT can be found on the HDR Innovation Gateway

Retinal disease

Some recent research using Artificial Intelligence and machine learning:

Predicting wet age-related macular degeneration (AMD) using DARC (detecting apoptosing retinal cells) AI (artificial intelligence) technology (paper published December 2020)
OCT-based deep learning algorithm for the evaluation of treatment indication with anti-vascular endothelial growth factor medications (paper published January 2018)
Prediction of Causative Genes in Inherited Retinal Disorders from Spectral-Domain Optical Coherence Tomography Utilizing Deep Learning Techniques (paper published April 2019)
Fully automated detection of retinal disorders by image-based deep learning (paper published January 2019)
Eye2Gene - a web app to assist genetic diagnosis of inherited retinal disease with artificial intelligence
(project led by Nikolas Pontikos of UCL Institute of Ophthalmology and Moorfields Eye Hospital Reading Centre)
Using AI in new ways to investigate retinal diseases (project funded by Moorfields Eye Charity project from October 2019)

Diabetic retinopathy

Here are some recent examples of research using eye datasets to investigate the effectiveness of current treatments and the potential for new screening techniques powered by artificial intelligence:

Alzheimer’s

Insights into Systemic Disease through Retinal Imaging-Based Oculomics (paper published April 2020)

Glaucoma

Cataracts

Artificial Intelligence for Cataract Detection and Management (paper published March 2020)

Personalised medicine

‘Delivering personalized medicine in retinal care: from artificial intelligence algorithms to clinical application’ (paper published September 2020)

Health data poverty

‘A Global Review of Publicly Available Datasets for Ophthalmic Imaging: Recognising Barriers to Access, Usability and Generalisability’ (paper published October 2020)

Covid-19

See details of a Covid-19-related dataset from INSIGHT on the HDR Innovation Gateway