The ODI is working with the INSIGHT Health Data Research Hub to involve the public, patients and other stakeholders in data stewardship

INSIGHT is one of seven Health Data Research Hubs funded through Health Data Research UK and announced in September 2019.

INSIGHT will bring together and make available anonymised data from eye scans and images, and advanced analytics, to NHS, academic and industry researchers. It aims to unlock new insights in disease detection, diagnosis, treatment and personalised healthcare.

The hub is focused on eye diseases such as age-related macular degeneration and glaucoma, and as many other systemic diseases manifest themselves in the eye, its application to wider health. This focus is a timely one, given that the number of people with sight loss in the UK is expected to double to over four million by 2050.

Involving the public, patients and other stakeholders in deciding how the data made available by INSIGHT is shared and used is central to the hub’s plans. The ODI is supporting INSIGHT to do this, working closely with the charity Action Against AMD and University Hospitals Birmingham and Moorfields Eye Hospital’s existing public and patient involvement and engagement teams. This builds on our experience and interest in empowering people to play a more active role in data stewardship – collecting, maintaining and sharing data, and in particular, determining who has access to it, for what purpose and to whose benefit.

INSIGHT is a partnership led by University Hospitals Birmingham, alongside Moorfields Eye Hospital, the University of Birmingham, Roche, Google Health and Action Against AMD, and is initially funded through Health Data Research UK for three years.

We will share regular updates on our work as the project progresses. If you have questions regarding this work or would like to discuss it further then please email jack.hardinges@theodi.org.

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