The group also considers international standards and interoperability and engages with organisations with data standards remits to ensure alignment and reduce fragmentation of recommendations where possible.
Our approach to data quality and standards is guided by the following principles:
- Support adoption of FAIR data principles
- Alignment with existing and proposed health data standards where possible, leveraging existing developments in this area by other groups
- Optimise both research and clinical benefits of data use and interoperability by having common standards for research and clinical / operational value
- Use existing open standards where possible, including planned alignment with internationally supported standards
- Recognises the need to adopt common data standards for harmonisation and alignment
- Minimise additional resource required to manipulate datasets through Health Data Research UK (HDR UK)
We have supported and enabled the Digital Innovation Hub (DIH) Programme by providing a first wave of quality and standards guidance for datasets generated by the Alliance and the Health Data Research Hubs and how these are discoverable through the Health Data Research Innovation Gateway (the ‘Gateway’). We have a fully operational offer for researchers and innovators through the Minimum Viable Product (MVP) Gateway, with datasets from the Alliance and Hubs discoverable
Ongoing activities include:
- Overarching oversight groups were composed with named data officer representatives from all member organisations across the NHS and equivalent bodies in the devolved nations as well as HDR UK representatives members. The Alliance and Hubs Data Officer Groups discuss data quality, data standards, metadata standards, data provenance, and ontology / terminology
- Membership on the ‘Interoperable Data Design Collaborative’ which includes other organizations such as NHS Digital, NHS X and the Office for National Statistics.
- Consulting on the updated Principles for Data Standards Green Paper in April 2021 by gathering views from people we work with across HDR UK community.
- Developing papers on the international landscape of health data sharing initiatives, literature and legislation of data standards
- The development of Common Data Elements to display on the gateway and an alignment around a core set for HDR UK purposes to help improve alignment and interoperability of future data.
- Improve the utility of health data to increase usability and adoption with the HDR UK Data Utility Framework and to gain use nationally and internationally.
- Developing the metadata specification to support the Innovation Gateway, which is used by data custodians to submit metadata.
- The release of our White Paper ‘Recommendations for Data Standards in Health Data Research’, which builds on the principles from set out in our June 2020 report ‘Principles for Data Standards’.
If you would like further information on this project or if you are interested in contributing, please contact firstname.lastname@example.org