INSIGHT datasets
About the datasets
The datasets currently available through INSIGHT come from two NHS Trusts: University Hospitals Birmingham (UHB) and Moorfields Eye Hospital. The anonymised, longitudinal data they contain have been collected over many years through routine screening and treatment programmes, surgeries, regular follow-ups and emergency admissions. They include millions of retinal images (OCT scans and fundus/retinal photographs) alongside demographic information, treatment history, visual acuity tests and associated clinical health records.
The primary conditions associated with these datasets are age-related macular degeneration (AMD), diabetic retinopathy, diabetic macular oedema, glaucoma and cataracts.
Applying for INSIGHT data
To make an application for INSIGHT data, you can:
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Apply using the INSIGHT Data Use Application
Guidance and Application Form:
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Visit the Health Data Research Innovation Gateway
Before making a formal application, we strongly recommend that you contact us to discuss your data proposal, either by filling in the enquiry form below or by emailing us directly: enquiries@insight.hdrhub.org
Dataset summaries
Each summary has a link to view the full details on the Health Data Research Innovation Gateway. The order of the datasets reflects when they were added to the Gateway. You can also view the collection of INSIGHT datasets on the Gateway.
1. Diabetic Eye Screening: the Birmingham, Solihull and Black Country Data Set
Diabetic screening data containing routine community annual longitudinal screening patient results of 200,000 patients with screening results per patient ranging from 1 year to 15 years.
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Current patients: >200,000
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Past patients: >100,000
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Publishing frequency: Continuous
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Last updated: 25/03/2020
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Geographic coverage: West Midlands region, Great Britain
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Pathway: Dataset is representative of the patient pathway for community screening and grading. It covers standard UK PHE Diabetic Eye Screening requirements and will include patients receiving screening through the standard model, routine diabetic screening, surveillance and slit lamp; diabetic population from all ethnic groups from age 12 onwards
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Data controller: UHB NHS Foundation Trust
2. UHB Eye Image Dataset Release 001
Routine clinical ophthalmology data for every patient who has been seen at Queen Elizabeth Hospital and the Birmingham, Solihull and Black Country Diabetic Retinopathy screening programme at University Hospitals Birmingham NHS Foundation Trust.
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Current patients: >300,000
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Past patients: approx. 100,000
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Hospital patients: approx. 34,000
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Publishing frequency: Continuous
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Last updated: 31/03/2021
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Geographic coverage: West Midlands region, Great Britain
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Pathway: Views of the retina are core to the Diabetic Retinal Screening Programme and as such are a record of the patient, providing the evidence to a retinopathy grade; diabetic population from all ethnic groups from age 12 onwards
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Data controller: UHB NHS Foundation Trust
3. UHB Linked Diabetic Eye Disease from National Screening to Hospital Eye Care
The diabetic eye pathway from diabetic eye screening to hospital eye care from the Queen Elizabeth Hospital, Birmingham. Key data included are demographics, national screening diabetic grade, visual data, treatment and longitudinal visual outcomes.
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Patients: 18,782
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Publishing frequency: Annual
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Last updated: 22/10/2021
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Geographic coverage: West Midlands region, Great Britain
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Pathway: This dataset is representative of the patient pathway for community screening of diabetic eye disease and grading. This DES dataset is linked within this dataset to include those patients who were subsequently seen at the Ophthalmology Department at the Queen Elizabeth Hospital, UHB, for worsening of their diabetic eye disease. This limits the dataset to only those patients who have been seen both in screening and subsequently in the hospital for eye disease
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Data controller: UHB NHS Foundation Trust
4. Moorfields Eye Image BioResource 001
The Imaging and Ocular Phenotype Bioresource at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal eye imaging dataset comprising routinely collected patient data from 2001 to the present. This dataset has in excess of 13 million high quality images.
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Patients: 319,048
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Images: 13,237,510 (604,168 eyes)
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Publishing frequency: Continuous
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Last updated: 22/10/2021
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Geographic coverage: Great Britain
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Pathway: The dataset is representative of the entire medical specialty of ophthalmology, encompassing the full range of subspecialties within this field.
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Data controller: Moorfields Eye Hospital NHS Foundation Trust
5. Moorfields AMD Dataset 002
The AMD Dataset at Moorfields is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) from 2004 to the present.
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Patients: 8,692
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Images: 1,994,798 (17,068 eyes)
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Injections (Lucentis/Eylea): 176,361 (11,001 eyes)
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Visual acuity readings: 513,945 (17,429 eyes)
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Publishing frequency: Continuous
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Last updated: 22/10/2021
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Geographic coverage: Great Britain
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Pathway: The dataset is representative of the entire pathway for patients receiving treatment for age-related macular degeneration (AMD) at Moorfields Eye Hospital NHS Foundation Trust
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Data controller: Moorfields Eye Hospital NHS Foundation Trust
6. Glaucoma dataset at University Hospitals Birmingham
The University Hospitals Birmingham (UHB) glaucoma dataset is a longitudinal dataset consisting of routinely collected clinical metadata from patients receiving treatment for glaucoma at UHB, from 2007 to the present.
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Patients: 5,065
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Publishing frequency: Annual
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Earliest data: 01/08/2006
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Last updated: 22/10/2021
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Geographic coverage: West Midlands region, Great Britain
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Pathway: The UHB glaucoma dataset is representative of the patient pathway for diagnosis and treatment of glaucoma, and longitudinal follow-up
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Data controller: UHB NHS Foundation Trust
7. Neovascular age-related macular degeneration at University Hospitals Birmingham
The University Hospitals Birmingham (UHB) age-related macular degeneration (AMD) dataset is a longitudinal dataset consisting of routinely collected clinical metadata from patients receiving treatment for AMD at UHB, from 2007 to the present.
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Patients: 1,361
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Eyes receiving treatment: 15,063
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Publishing frequency: Annual
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Earliest data: 01/06/2007
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Last updated: 22/10/2021
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Geographic coverage: West Midlands region, Great Britain
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Pathway: The UHB AMD dataset is representative of the patient pathway for diagnosis and treatment of wet AMD and longitudinal follow-up
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Data controller: UHB NHS Foundation Trust
8. Eye images and retinopathy grades in diabetic eye screening
The dataset is a longitudinal dataset consisting of eye images and retinopathy grades from those who are screened for diabetic retinopathy in the Birmingham, Solihull and Black Country DR screening program.
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Patients: >200,000
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Gradings: 1.68 million
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Images: >6 million over 15 years
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Publishing frequency: Annual
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Last updated: 22/10/2021
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Earliest data: 30/11/2020
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Geographic coverage: West Midlands region, Great Britain
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Pathway: The Birmingham, Solihull and Black Country dataset is representative of the patient pathway for community screening and grading of diabetic eye disease. It covers standard UK Public Health England Diabetic Eye Screening requirements and will include patients receiving screening through the standard model, routine diabetic screening, surveillance and slit lamp examination
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Data controller: UHB NHS Foundation Trust
9. UHB Linked Diabetic Eye Disease in Acute Diabetic Hospital Admissions
Eye data for those identified by having an ED admission and acute care for their diabetes at Queen Elizabeth Hospital, Birmingham. Key data included are demographics, duration of diabetes, outcomes, comorbidities, national screening diabetic grade and visual data.
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Patients: 30,105
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Publishing frequency: Annual
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Last updated: 22/10/21
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Earliest data: 01/01/2000
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Geographic coverage: West Midlands region, Great Britain
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Pathway: This dataset is representative of the patient pathway for community screening of diabetic eye disease and grading. This DES dataset is linked within this diabetic emergency hospital dataset to include those patients who were subsequently admitted to the Queen Elizabeth Hospital, UHB, for complications of their diabetes. This limits the dataset to only those patients who have been seen both in primary care screening and subsequently in the hospital for diabetes
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Data controller: UHB NHS Foundation Trust
10. UHB Linked Diabetic Eye Disease and Cardiac Outcomes
Vision and systemic cardiac outcome data for those identified by having a diabetic screening eye test and an acute episode at Queen Elizabeth Hospital, Birmingham. Key data include demographics, longitudinal cardiac outcomes, visual data, and eye grades.
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Patients: 64,389
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Retinal scans: 1,843,659
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Publishing frequency: Annual
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Last updated: 22/10/2021
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Earliest data: 01/01/2005
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Geographic coverage: West Midlands region, Great Britain
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Pathway: This dataset is representative of the patient pathway for community screening of diabetic eye disease and grading. It is linked within this dataset to include those patients who were then subsequently admitted to the Queen Elizabeth Hospital, UHB, for cardiac conditions. This limits the dataset to only those patients who have been seen both in screening and then subsequently in the hospital for heart disease
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Data controller: UHB NHS Foundation Trust
11. Moorfields DMO Dataset 003
The DMO Dataset at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for diabetic macular oedema (DMO) from 2004 to the present.
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Patients: 3,219
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Images: 809,779
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Injections: 42,729
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Visual acuity readings: 205,114
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Publishing frequency: Continuous
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Last updated: 22/10/2021
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Geographic coverage: Great Britain
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Pathway: The dataset is representative of the entire pathway for patients receiving treatment for diabetic macular oedema (DMO) in the Medical Retina service at Moorfields Eye Hospital NHS Foundation Trust
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Data controller: Moorfields Eye Hospital NHS Foundation Trust
12. Moorfields Ophthalmic Prescription 004
The Ophthalmic Prescription Dataset at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal dataset consisting of routinely collected patient data from 2016 to the present. This dataset has in excess of 1.8 million prescriptions.
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Patients: 226,958
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Prescriptions: 1,862,897
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Publishing frequency: Continuous
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Last updated: 14/12/2021
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Geographic coverage: Great Britain
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Pathway: The dataset is representative of the entire medical specialty of ophthalmology, encompassing the full range of subspecialties within this field
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Data controller: Moorfields Eye Hospital NHS Foundation Trust
13. Cataract surgery and visual outcomes at QE Hospital, Birmingham, UK
Cataract surgery and outcome data for those identified by having cataract surgery at Queen Elizabeth Hospital, Birmingham. Key data included are demographics, visual data, surgery details and outcomes.
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Number of cataract records: 14,304
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Publishing frequency: Annual
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Last updated: 17/02/2022
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Geographic coverage: West Midlands, United Kingdom (England)
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Pathway: Scope: all people undergoing cataract surgery from Dec 2004 onwards. Secondary care hospital visual outcome data including: demographic information (including age, sex and ethnicity); preoperative visual acuity; biometry details (including axial length and keratometry values); surgery details; post-operative outcomes (including complications)
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Data controller: University Hospitals Birmingham NHS Foundation Trust