Establishing common standards for healthcare data is a fundamental requirement to enable and enhance research. A more consistent set of data standards brings substantial benefits for the organisations that store data (‘custodians’) and health researchers, such as being able to compare and analyse datasets more quickly and easily and at a greater scale.
That research, in turn, has the potential to uncover greater insights and enable discoveries that will improve people’s lives.
As a key part of its role as the national institute for health data science to support the development of these standards, Health Data Research UK (HDR UK) has today released a White Paper ‘Recommendations for Data Standards in Health Research’
The paper is published by the UK Health Data Alliance (the ‘Alliance’), to encourage improvements in the utility and usability of data, with the primary focus to benefit research through the provision of clear guidance and recommendations.
The work has been developed with input from the health data community, as well as patients and the public. A key insight from the development process is that both users and custodians highlighted the importance of using open standards and clinical terminologies.
A wide range of data standards and models exist and can be used for many purposes. The key recommendations are that in the absence of alternative standards, organisations should adopt the most common well-described data standards in health research (and for these to be made open across an organisation):
- Observational Medical Outcomes Partnership (OMOP) Common Data Model as the standard data model for observational health record data
- Health Level 7 (HL7®) Fast Healthcare Interoperability Resources (FHIR®) for data transit and associated APIs.
- Use of HDR UK’s metadata specification and the Data Utility Framework to help researchers find and understand the usefulness of datasets from various sources for research (including the new Data Utility Wizard tool to sort and filter searches for datasets on the HDR Innovation Gateway)
A high-level review of health data standards used across the G7 countries and Australia, with broadly comparable health care systems to the UK is also included in the White Paper, providing a starting point for alignment between UK and International standards.
Through the coming months, HDR UK will collaborate with members of the Alliance, its Health Data Research Hubs and other partners across the sector to encourage the adoption of these standards.
A common approach to standards for healthcare data – a timeline of co-creation
|June 2020||UK Health Data Alliance publishes an initial paper on Principles for Data Standards for structured electronic health records (EHRs)
|September 2020 –
|Survey of data uses, researchers and custodians across academia, charities, healthcare providers, life science, AI and technology organisations to develop understanding and thinking
|Green Paper published on data standards|
|June 2021||Interim White Paper published and shared with UK Health Data Alliance members for review and input
|December 2021||UK Health Data Alliance publishes final White Paper recommendations for benefit of custodians and researchers
If you are a researcher and would like to find out more about how the use of data standards can support your work, please contact Alison Elderfield.
We’re working with our colleagues across the HDR UK community and with our partners to establish and implement common standards for the quality of data used in research.
HDR UK releases an interim paper on Data Standards
23 June 2021
Health Data Research UK (HDR UK) are delighted to publish the latest interim paper Recommendations for Data Standards, building on the principles outlined in initial consultation paper published...
UK Health Data Research Alliance publishes new Green Paper on data use registers standards
14 July 2021
The UK Health Data Research Alliance, an alliance of health, care and research organisations convened by Health Data Research UK (HDR UK), has released a new Green Paper with recommendations for a...