As we start to unite the vast quantity of health datasets that exist across the UK and make them more widely available for wider use for health research, there becomes a growing need to be able to define, categorise and curate that data.
As the organisation responsible for uniting health data in the UK, HDR UK has developed the Data Utility Framework as a way to do this. This is the first time this has been done and therefore represents a huge development in the way we think about these datasets. It is a substantial task but one that will ultimately help researchers from academia, healthcare and industry to make more sense of the increasing data resources available to them.
The framework was tested on more than 40 datasets to ensure that it meets the needs of all users, to provide extra ways to more precisely filter their searches; helping to more quickly and accurately identify the datasets that will be most relevant.
To support users in identifying in advance whether a dataset would be suitable for their specific purposes, Health Data Research UK has developed the Framework in partnership with users and data custodians. Users of data from a broad range of sectors across industry, academia and healthcare, were involved through surveys and interviews to help refine the tool after an initial Green Paper was published in August 2020.
Feedback from users elicited some common themes, in particular the requirement to review the criteria around higher ‘scoring levels’, specifically on pathway coverage and data documentation. The dimensions and framework overall are therefore reflective of these needs, rather than solely the ability to score highly.
The Framework is summarised below and can be seen at work in the HDR UK Innovation Gateway.
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