It is being created to support UK health research and benefit patients by enabling access to data to help better understand diseases and discover new ways to prevent, treat and cure them. It has been developed on behalf of members of the UK Health Data Research Alliance, 27 leading health and research organisations that are uniting to establish best practice to enable the ethical use of UK health data for research and innovation at scale.
Created with input from patients and researchers, this first phase of the Gateway provides a library of information about over 400 health datasets that are held and managed by the NHS, research charities, research institutes and universities. It provides detailed information about the datasets, such as a description, coverage, and data access requirements and has seen a rapid development in just 12 weeks. The intention is to both grow the number of datasets listed, and to develop the information about them, to enable better access to the rich health datasets held across the UK. Feedback from this first phase will help to inform further development of the tool.
The Gateway is structured to enable researchers to search for datasets that are important for their research, for example by disease area (e.g. cancer). Once discovered, users of the Gateway can send enquiries about access to relevant datasets to the organisation that holds and looks after this data (the ‘data custodian’), which are all part of the UK Health Data Research Alliance.
The Gateway does not hold or store any patient or health data. The intention is for data to continue to be held and managed by the organisation that is responsible for the data (sometimes referred to as the data custodian).
Andrew Morris, a doctor with a special interest in diabetes and Director of Health Data Research UK, said: “By making information about these health datasets, that we are so fortunate to have in the UK, more widely available, we can enable researchers to discover what they need to help answer their important research questions. We are working with our Public Advisory Board and patient representatives from our Hubs to guide us as we develop these services and tools as their wishes and values must determine how their data is used.”
Access to any patient or health data will continue to be the responsibility of the organisation that manages the data to decide whether or not approve access requests. Health Data Research UK is committed to supporting ethical and responsible research and innovation and will only list information about datasets from organisations that follow its principles for participation.
The next stage of the Gateway will continue to be developed in partnership with patients, the public, clinicians and researchers. If you would like to get involved, contact us at firstname.lastname@example.org