Data Initiatives
In contrast with late stages of AMD, earlier AMD is more difficult to classify, as there are conflicting views on features used for existing classification. Moreover, most of classification rely heavily on fundus photography, and presence and features of drusen.
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The existence of OCT scanners (Optical Coherence Tomography) and its fast-paced technological evolution has recently led to rapidly decreasing costs and higher data quality.
In addition to flat images from fundus photography (surface of retina), OCT scans generate 3D volumes imaging many layers of cell underneath the surface of the retina.
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Taken together, these digital datasets present an unprecedented opportunity to add completely new dimensions in the search for novel markers of early AMD.
Additionally, potential new markers might also offer ways to track progression towards the sight loss stages – which we can use and work together with regulators such as the US FDA and UK MHRA in defining clinical endpoints for early AMD. This would ultimately help researchers to the effectiveness of any new treatment.
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AAAMD has been working with various partners aiming at making anonymised, large-scale ophthalmic data available for patient-focussed research, under transparent and ethical governance on the use of such data.
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Uniting health data for discoveries
Action Against AMD has partnered with leading organisations to establish INSIGHT - the Health Data Research Hub for Eye Health.
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INSIGHT will use the latest digital tools to make existing datasets accessible, bringing scale and efficiency to the collection and curation of anonymised data, and accelerating the benefit to patients.
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The Health Data Research UK (HDR UK) Hubs are part of the UK Government's Industrial Strategy Challenge Fund to create a UK-wide system for the safe and responsible use of health-related data on a large scale.
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The other partners are University Hospitals Birmingham, Moorfields Eye Hospital, University of Birmingham, Roche and Google.
Building trust in data governance with patients and public
Involving the public, patients and other stakeholders in deciding how ophthalmic data is shared and used is absolutely paramount.
Action Against AMD has been working with the Open Data Institute (ODI) to explore the best ways to create a transparent, ethical and inclusive framework.
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This builds on ODI's 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.
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INSIGHT's Data Trust Advisory Board (DataTAB) is one of the projects we have been developing with ODI to bring patients and public into governance and decision making on appropriate use of data.
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