Questions & Answers
Why was the INSIGHT Hub created?
INSIGHT was set up by healthcare professionals working with academic and commercial partners. Their aim was to create a Hub that would foster digital innovation in eye care within the UK by making large datasets available for research, development and innovation. With eye problems affecting 1.3 billion people worldwide, the team behind INSIGHT realised that Artificial Intelligence has huge potential to translate into real patient benefit, with implications for global advances in healthcare well beyond eye disease.
Where does the INSIGHT data come from?
Existing data has been collected from patients at Moorfields Eye Hospital in London and University Hospitals Birmingham, two of the world’s leading centres for eye care, research and education.
How will patient data be kept safe and anonymous?
All individuals and organisations involved in the Hubs will be required to comply with existing legal obligations relating to data. In addition to the existing safeguards, organisations involved in Digital Innovation Hubs will be required to adhere to the HDR UK Principles for Participation.
INSIGHT’s data partners are Moorfields and Birmingham University Hospitals, which have established approaches for the deidentification of data, as well as robust access request procedures. INSIGHT adheres to HDR UK’s ‘five safes’ principles for the use of data: safe projects, safe people, safe settings, safe data and safe outputs. INSIGHT also has a patient Sounding Board that engages with all our activity and ensures a focus on the ethical and responsible use of data for the benefit of UK patients and the public.
How are patients involved?
We see patients as being partners in this work. Patients and the public were involved in the design of the overall Health Data Research Hub programme through events and discussions with patient groups. We have committed to ensuring patients and the public’s ongoing and fundamental input in how data is collected, curated and made accessible by INSIGHT.
What benefits will the Hub bring to patients?
The overall aim is to improve health, both now and in the future. Research is vital in developing understanding of disease and human health in order to develop new treatments, technologies and medicines. By making health data more accessible for research and innovation, there is huge potential to provide new treatments to patients more quickly. Potential benefits to patients include:
- Optimising patient care
- Supporting drug discovery
- Better diagnostics
- Faster access to clinical trials
- Better treatment – for example, via improved access to personalised medicine
- Better prevention of a range of conditions
- Developing new artificial intelligence solutions to accelerate understanding of diseases
Will data be sold for commercial purposes?
Our role as a Hub is to enable responsible access to data for research and innovation where it will benefit patients and the population. Anyone requesting access to data must demonstrate the benefits that their research will bring to patients and the NHS. There will always be a fair value for the data – it will not be freely available.
Any charges we set to use data or services are yet to be determined, but access will only ever be provided within legal frameworks, strict parameters of the Codes of Practice and the standards set out by the National Data Guardian and regulatory bodies, including the Information Commissioner’s Office (ICO).
What are the benefits for the companies involved in INSIGHT?
The companies that form part of the INSIGHT Hub – Google and Roche – will not be given preferential access to the data itself. However, by working with us, companies can hone their skills and expertise in providing specific services to the Health Data Hubs. In turn, this will help us develop joint solutions that speed up innovation in UK healthcare, to the benefit of patients, healthcare professionals, the NHS and the industry as a whole.
Why should public money be invested in INSIGHT?
There is significant potential benefit to the whole UK population in the effective use of health data for research, including through earlier diagnosis, developing more effective treatments and supporting the NHS. The initial investment by the UK taxpayer will also stimulate further economic growth through greater research activity.
How will INSIGHT’s success be measured?
INSIGHT is required to provide evidence that we have met a number of targets set out by HDR UK. In the short term, we have to make our health datasets available, provide a description of the number of datasets, their scale and quality, and set out how we will engage with, and involve, patients and the public concerning access to, use of and security of patient data.
Later on, we will need to show that the quality and usability of the datasets have improved, and publish case studies demonstrating impact and value to researchers, innovators, patients and populations. We will also need to show that we are continuing to engage and involve patients and the public in a meaningful manner, ensuring they are at the centre of our governance process.