Eye health research gets a major funding boost for use of data

Posted: Wednesday 11 September 2019

The research collaboration Action Against Age-related Macular Degeneration, set up by the Macular Society and other charities, is now part of a brand new government-funded push to find new cures for eye diseases.

AAAMD is a partner on a project that aims to use health data and new technologies to improve treatments and services for people with eye health conditions.

The partnership is called INSIGHT, and has been awarded a share of a £37 million pot to improve the use of NHS data through ‘digital hubs’.

INSIGHT will take data from routine eye scans and anonymise it for use in research. This information will then be used by experts in different areas of eye health, who will use Artificial Intelligence and other cutting-edge technologies to analyse it. These experts will be from a range of fields, including academia and pharmaceutical companies.

This work will develop better understanding of conditions, speed up the development of new treatments and improve the services that people will receive. Patients will be involved in decisions about how their data is used to ensure the benefits are returned to the NHS and the wider UK community, and existing rules for accessing data safely and securely will continue to apply.

The larger initiative is led by Health Data Research UK, and INSIGHT is one of seven hubs that was awarded funding.

Cathy Yelf, Macular Society’s chief executive, said:

“Age-related macular degeneration is the leading cause of sight loss in the UK, affecting over 600,000 people. We desperately need much more investment into research if we are to see the improved treatments and a cure that these people deserve.

“The use of existing data and utilising new technologies is an essential part of this, and we’re delighted that INSIGHT has been selected to receive funding. Including patients within this work is so important to make sure that the progress they really need is realised.”

Dr Wen Hwa Lee, CEO Action Against AMD, who also represents Blind Veterans UK, Fight for Sight, Macular Society and Scottish War Blinded, said:

“We welcome Health Data Research UK’s and INSIGHT’s ground-breaking initiative to include patients and public in transparently deciding how health data can be used. This is a great way to establish trust among all stakeholders, who can create together the future of eye health and possibly even other conditions.”

Action Against Age-related Macular Degeneration is a partnership founded by four leading sight loss charities, including the Macular Society, to join efforts in identifying new interventions to stop the progression of early AMD. Fellow partners in the initiative include Blind Veterans UK, Fight for Sight and Scottish War Blinded.