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Patient and public involvement and engagement

Involving patients and the public is one of our core principles. Diverse perspectives help to ensure that the research priorities and innovations we support benefit patients and the wider NHS.

How do we work with patients and the public?

Patients, their families, carers, and the public from all communities are valued partners in research enabled by INSIGHT.  We involve patients and public across our work, including decision-making on which researchers can access eye health data.

 

We also engage with patients and the public to communicate how patient data is collected and may be used to drive sight-saving research. We openly share details of all research projects that are approved for data access, as well as the latest breakthroughs made possible through INSIGHT. 

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Here are the ways in which we involve and engage patients and the wider community:

Data Trust Advisory Board

The Data Trust Advisory Board (DataTAB) is a key part of INSIGHT's governance, overseeing requests to access patient data. It includes patients and members of the public.
Find out more about the DataTAB

Patient & Public Representative Group

In addition to involving patients and public in the DataTAB — overseeing data use applications — our Patient & Public Representative Group meets regularly to provide input on ongoing INSIGHT activities. We welcome interest from new members. Please get in touch to find out more: enquiries@insight.hdrhub.org

Events

We hold engagement events for patients and the public. At our June 2024 showcase at Moorfields Eye Hospital, City Road, we welcomed patients, members of the public, and staff to find out firsthand how eye data is helping to advance earlier detection, treatment and care of disease. Details of upcoming events will be published on our News page and social media channels. 

Accessible information 
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