What is INSIGHT and why was it set up?
INSIGHT is a health data research hub focused on eye health and associated conditions. We are one of seven hubs set up by the UK government to speed up research for new medicines and treatments, support quicker diagnoses and potentially save lives.
We are committed to involving the public and patients in how INSIGHT works and its decision-making process. Find out more about our public and patient involvement and engagement.
The health data research hubs are funded by UK Research and Innovation's Industrial Strategy Challenge Fund with the aim of creating a UK-wide system for the safe and responsible use of health-related data. The hubs are overseen by Health Data Research UK, the national institute for health data science.
The benefits of INSIGHT
Our guiding principle is to benefit patients, the NHS and the wider public through the development of new insights in disease detection, diagnosis, treatments and personalised healthcare.
We will achieve this by allowing trusted researchers to access high quality, large-scale and anonymised health data. This will allow them to use advanced analytics, including artificial intelligence, on many types of eye imaging and associated patient health records.
The data will be available through INSIGHT from March 2021. However, this type of research is well established, and has already led to breakthroughs in a number of areas of medicine. Our aim is to encourage and accelerate this work, and ultimately transform the way eye disease and other associated conditions are diagnosed and managed.
INSIGHT is a partnership of six organisations from the health, academic and technology sectors:
University Hospitals Birmingham NHS Foundation Trust (lead)
Moorfields Eye Hospital NHS Foundation Trust
The University of Birmingham
Action Against AMD (founded by Fight for Sight, Macular Society, Blind Veterans UK, Scottish War Blinded, Royal Blind)
These partners bring together the leading expertise in eye care, health technology and data management. By combining expertise from the NHS, academia and commercial organisations, we have the ability to innovate and progress in a way that no single organisation, public or private, could achieve on its own.
The INSIGHT Data Trust Advisory Board
Our Data Trust Advisory Board (DataTAB) is a key part of our governance, and has been set up to provide ethical oversight to everything we do.
The DataTAB is made up of ten members from a range of complementary backgrounds. Their role is to scrutinise users’ requests to access the data held by INSIGHT. This ensures that the views of patients and the public are represented where it matters – at the heart of the decision-making process about who is allowed to access the data held by INSIGHT, and under what conditions.
INSIGHT is made up of a core leadership team as well as a number of staff drawn from across the six partner institutions. They bring together a wealth of expertise in ophthalmology, data management, pharmaceuticals, patient involvement and communication.
Public and Patient Involvement and Engagement (PPIE)
We are committed to ensuring that the views of patients and the public inform decision-making at every level as we develop our systems and processes. In addition, transparency is one of our core principles: about how INSIGHT works, how decisions are made, and the outcome of requests to access patient data.
INSIGHT is also committed to maximising value to patients and the public by ensuring that future research findings from all studies conducted using INSIGHT data are published in an appropriate and timely way.
Images (top to bottom): 1) Close-up of an OCT machine in use, 2019. Credit: Moorfields Eye Hospital (library shot); 2) Senior staff at Moorfields (David Probert, left, and Gordon Hay, right), 2018. Credit: Anton Webb / UCL Institute of Ophthalmology; 3) Hands joined in a circle. Credit: pixabay.com; 4) Composite photo - four headshots of the INSIGHT team: Cían Hughes, Alastair Denniston, Pearse Keane, Jill Hopkins (left to right, top to bottom); 5) Patient undergoing an eye examination using a split lamp at Moorfields, 2018. Credit: Anton Webb / UCL Institute of Ophthalmology
Please note, photos of people in shared spaces without facemasks pre-date the 2020 Coronavirus pandemic.