Data Standards and Quality
Through the data standards and quality delivery workstream we bring together data officers from across the Alliance to oversee, coordinate, and produce guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use.
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.
The OMOP Common Data Model
The Alliance is undertaking a number of activities to support the adoption of data standards in the UK health data ecosystem. In particular, we are focusing on the Observational Medical Outcome Partnership (OMOP) Common Data Model (CDM) developed by the Observational Health Data Sciences and Informatics (OHDSI) consortium.
Supporting data custodians in transforming their data assets to the OMOP CDM, enables the data sets they routinely collect to be leveraged for research, and combined and federated with other data sets.
Our current activities include:
- The HDRUK Alliance is convening an OMOP special interest group, to share experiences, knowledge, resources, and tools for data transformation to the OMOP common data model. The inaugural meeting was held on 27th June 2023. It is a start of national collaboration, forming a strong link to EDHEN Consortium and OHDSI UK Node, working in partnership to support OMOP adoption. Next steps and plans for future meetings will be communicated soon. Outputs from the inaugural meeting can be found here.If you are interested in joining the Special Interest Group for OMOP, please email ukalliance@hdruk.ac.uk to express an interest.
- Collaboration with the EHDEN consortium to support UK data custodians in transforming their data to the OMOP CDM. Five new UK data partners have joined the initiative with our support.
- Working with partners including NHS England to understand the adoption of OMOP and other standards across the UK; what data has and has not been transformed to OMOP; the impact and applications of that work, the barriers to the adoption of standards, and what support is needed to overcome them. We are keen to hear from you whether or not you are working with OMOP, and whether you are a data user or a data custodian. Please complete the survey at this link:
https://www.surveymonkey.co.uk/r/BRG538V or use the QR code below to complete on a phone or tablet.
Our approach to data quality and standards is guided by the principles set out in the Alliance’s Data Standards White Paper.
- HDR UK announcement of five new EHDEN data partners.
- Lifebit announces collaboration with Genomics England on EHDEN project.
- HDR UK resources for OMOP on GitHub include:
- Example scientific publications using OMOP:
- Transforming and evaluating the UK Biobank to the OMOP Common Data Model for COVID-19 research and beyond. Vaclav Papez, et al., Journal of the American Medical Informatics Association, 30(1): 103–111, January 2023 https://doi.org/10.1093/jamia/ocac203
- Transforming and evaluating electronic health record disease phenotyping algorithms using the OMOP common data model: a case study in heart failure. Vaclav Papez, et al., JAMIA Open, 4(3), July 2021, ooab001 https://doi.org/10.1093/jamiaopen/ooab001
Previous work on data quality and standards
During the first phase of the Alliance (2019-2023) 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 Gateway, with datasets from the Alliance and Hubs discoverable.
Main activities included:
- 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. The Alliance and Hubs Data Officer Groups discuss data quality, data standards, metadata standards, data provenance, and ontology / terminology.
- 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.
- Improvement of the utility of health data to increase usability and adoption with the HDR UK Data Utility Framework and to gain use nationally and internationally.
- Development of the metadata specification to support the Innovation Gateway, which is used by data custodians to submit metadata.
- The release of a White Paper on ‘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’.