Using research data: INSIGHT Health Data Research Hub

Key findings

• Increased participation by patient groups in how data should be used by health and research teams.

• Improved healthcare service planning and reduced risk of long-term eye deterioration through better use of data to identify early diagnosis opportunities.

Why do we need data governance frameworks for research data?

Data use in research can help improve health outcomes. As researchers look to make use of data acquired from multiple sources, as well as make better use of their own research, there is a need to build trustworthy data ecosystems where patients are aware of how their data is used, and are partners in encouraging data use to improve health outcomes. This requires researchers and patient organisations to work together in new ways.

Accessing, using and sharing eye health data

In the UK, INSIGHT – a Health Data Research Hub for eye health – is involving the public, patients and other stakeholders in deciding how health data is used and shared. INSIGHT brings together and makes available anonymised data from eye scans and images, and advanced analytics, to the UK’s National Health Service (NHS), and academic and industry researchers.

INSIGHT aims to unlock new insights in disease detection, diagnosis, treatment and personalised healthcare through the following data governance processes:

• The INSIGHT Data Trust Advisory Board – or ‘INSIGHT DataTab’ – provides meaningful oversight and scrutiny of the hub’s use and sharing of data.

• A process was developed where the hub receives an application from a researcher to access data, and then processes the request to check that it is technically and legally feasible.

• Applications are reviewed by the INSIGHT DataTab.

INSIGHT is learning from existing work to standardise data such as NHS Digital’s Data Access Request Service, the Health Research Authority Confidentiality Advisory Group, and the Personal Information and Access Sub-Committee for assessing data. A Data Hub platform is provided to project partners which aligns with these data formats.

What can we learn from this case study?

This project was instrumental in ensuring participation from patient representative groups. Developing a data governance framework is vital to enabling the public, patients and other stakeholders to be involved in deciding what data is made available by INSIGHT and how this is shared and used. By involving patient representative groups in deciding how health data will be used, greater trust is built among stakeholders and the community around consenting to future health data sharing.

Using data to improve health outcomes

During the COVID-19 pandemic, there was a sharp decline in appointments for eye tests at hospitals, which can lead to late-stage diagnoses which cannot be treated in time to prevent sight loss. The use of data collected through INSIGHT meant there was better service planning and outreach to ensure that patients had timely access to services, reducing the risk of irreversible eyesight loss. Data has also been used to create new tools that can detect up to 50 different retinal diseases.