Information for researchers and organisations interested in accessing INSIGHT datasets
In this section, you will find answers to questions about the data held by INSIGHT and how to access it. For examples of the kinds of research already being carried out using eye health data, see our Benefits of INSIGHT page.
The application process for data held by INSIGHT is managed by Health Data Research UK through the Health Data Research Innovation Gateway. The Gateway's guidelines section explains out how to search and apply for data, as well as the criteria used to assess applications.
The Health Data Research Innovation Gateway
Operated by Health Data Research UK, the HDR Innovation Gateway provides a single portal to discover and request access to a huge range of NHS datasets, including those made available by INSIGHT. The Gateway contains qualitative and quantitative information about each of the datasets, including a detailed description, age and size of population, and licensing information. Applications to access the data should be made through the Gateway.
Users can search the catalogue of health datasets, research projects and publications, and collaborate via a community forum.
Please note, the INSIGHT datasets listed on the Gateway will be available in early 2021.
What makes INSIGHT datasets unique?
We know that people commonly regard sight as their most valued sense, but the importance of the eye in medicine goes well beyond the function of seeing. The eye has long been regarded as a window into the human body, but the increasing use of high-resolution imaging has led to the development of a new science – termed 'oculomics' – in which ocular biomarkers are used to detect systemic disease.
Ophthalmology and optometry benefit from the largest number of images and outpatient visits across the NHS, providing a unique opportunity for the collection of data at scale through INSIGHT. The potential value of high-resolution ophthalmic imaging is huge, because it is:
Gives micron-level resolution of neural, vascular and stromal tissue
Fast, non-invasive and light-based
Known for high patient acceptability and compliance, enabling frequent repeat testing
Already available on the high street
What data is available through INSIGHT?
Thirty datasets will be available early in 2021 via the HDR Innovation Gateway. These span many areas of eye health and include varying levels and types of data based on individual patient records. The data includes ophthalmic imaging, visual field tests and other clinical data.
Existing data has been collected from patients at Moorfields Eye Hospital in London – one of the world’s leading centres for eye care, research and education – and University Hospitals Birmingham – one of the UK’s largest acute NHS Trusts and a leader in digital healthcare.
How do I find out what data INSIGHT holds?
Information on all of our datasets is available on the HDR Innovation Gateway.
Will INSIGHT datasets change over time?
New patient data from Moorfields Eye Hospital and University Hospitals Birmingham will be added to existing datasets on an ongoing basis. In the future, other NHS Trusts and eye centres may also join INSIGHT to make their routinely collected, anonymised data available for research that improves patient care.
Requesting data from INSIGHT
Who can apply to access INSIGHT data?
Only organisations with recognised research programmes and a clear commitment to research that will benefit patients will be considered; private individuals will not be able to access the data.
Anyone requesting access to data must demonstrate the benefits that their research will bring to patients and the NHS. This could include universities, research organisations and charities, pharmaceutical companies, technology companies and other organisations who can show that they want to use the data to improve outcomes for patients and/or the NHS.
In all cases, INSIGHT undertakes a due diligence process to ascertain that the applicant organisations are appropriate to be undertaking this research and to be provided with access to the data.
What criteria are used to assess applications?
INSIGHT uses the ‘Five Safes’ to assess applications, which are:
Safe projects: Is this use of the data appropriate?
Safe people: Can the users be trusted to use it in an appropriate manner?
Safe settings: Does the access facility limit unauthorised use?
Safe data: Is there a disclosure risk in the data itself?
Safe outputs: Are the statistical results non-disclosive?
Consideration of the Five Safes is central to the way INSIGHT works, and has been reviewed independently by the Research Ethics Committee.
The INSIGHT DataTAB also has set of specific criteria that it uses to scrutinise applications. These are:
Is there a clear audit trail of how the data is being used and published?
Is there a clear clinical outcome, social care or public health outcome?
Does the proposed application pose a significant risk to individuals’ privacy?
Will data obtained through INSIGHT be linked to other datasets? If so, has the applicant considered the risks and offered a mitigation process?
Do we believe that the risk mitigation process(es) are realistic and sufficient?
Has the applicant taken into account public / patients’ views when designing the project proposal? Has the applicant consulted public/ patients in the formulation of their research question/ project proposal?
Does the project outcome strike a good balance between public good, scientific discovery, value generation?
Will the proposed outcome disadvantage any group or individual?
How much does it cost to access the data?
There is a cost for INSIGHT and its partners in building the INSIGHT infrastructure, preparing the data and running the research service. To cover this, and to enable INSIGHT to be sustainable, applicants will be charged to access the data, or for services provided using the data, or both.
We are keen, however, that the cost is not a barrier to research that would benefit patients, so our costing model will take into consideration the type and size of the organisation applying.
Images (top to bottom): 1) A researcher in the lab at UCL Institute of Ophthalmology. Credit: Anton Webb / UCL Institute of Ophthalmology, 2018; 2) An OCT scan being performed at Moorfields, 2018. Credit: Moorfields Eye Hospital (library shot); 3) A patient undergoing an eye test at Moorfields, Credit: Anton Webb / UCL Institute of Ophthalmology, 2018; 4) A retinal examination being undertaken at Moorfields. Credit: Anton Webb / UCL Insitute of Ophthalmology, 2018.
Please note, photos of people in shared spaces without facemasks pre-date the 2020 Coronavirus pandemic.