The aim of this workstream is to support the convening of a network of technologists across the NHS, academia, policy and industry to align efforts, share tools, collaborate on shared components, drive adoption of recognised standards and accelerate trustworthy data use for research and innovation. This workstream also supports the continued development of the Health Data Research Innovation Gateway (the Gateway), a portal for data discovery and access. 

The Challenge 

Despite significant progress in recent years, access to and analysis of health data for research remains a lengthy and fragmented process. There are many technology solutions available to support researchers, including software programmes, tools, scripts, pipelines, platforms, and code, but they are dispersed across many organisations and groups working within this space, and there’s often limited sharing and re-use of the solutions developed across the wider community. 

The Solution 

We are bringing together all these individual components through the convening of a technology ecosystem, embedding a collaborative approach to co-create novel solutions that promote open science and encourage interoperability. This will allow health data science to scale at a greater pace than ever before; transforming how researchers access and analyse health data and enabling them to rapidly deliver patient and public benefit. 

The role of the Alliance 

One of the Principles for Participation that member organisations agree to when joining the Alliance is adopting the FAIR (Findable Accessible Interoperable and Reusable) Guiding principles for scientific data management and stewardship. Alliance members are involved in development of key Gateway functions, as well as providing information on the datasets which can be discovered on the Gateway, and participate in specific initiatives and working groups to inform implementation of policy and technology standards.  

  • Making data Findable through the Gateway: Launched in 2020 as part of the Digital Innovation Hub Programme, the Gateway is a central location to discover health data and other resources vital for research. Alliance members are encouraged to publish metadata on the Gateway, which serves as a portal for dataset discovery and requesting access. Currently, 51% of Alliance members who function as data custodians share their metadata on the Gateway. NHS England’s Data for R&D Programme has pledged to utilise the Gateway as the ‘single front door‘ for the NHS Research SDE Network. This initiative is expected to further enhance the discoverability and accessibility of NHS data. Contact to support with testing and co-development of the Gateway. 
  • Aligning Approach to TREs: One of the most influential outputs of the Alliance to date has been the principles, approaches and guidelines for data sharing and linkage practice within Trusted Research Environment (TREs). This paper established the blueprint for trustworthy data access, linkage and research within the health sector and beyond. The document has been accessed over 11,000 times and its influence, alongside the Goldacre Review, on Data Access Policy within the NHS in England is evident through publications and implementation guidance. 
  • Streamlining researcher verification across multiple TREs: The ‘Researcher Registry’ is one of the four pilot projects funded by UKRI  which aims to simplify decision-making processes when granting researchers access to sensitive health and administrative data. In line with the Five Safes Safe People principle, the aim is for a common standard and consistency across organisations, along with confidence in the accuracy of the data, to reduce the burden for both TREs/SDEs and researchers, enabling simpler, faster, more reliable decision-making. The Alliance is key to the development and wider adoption of the common standard. Contact to get involved or learn more about this project. 
  • Improving transparency in data use: HDR UK has developed the Gateway data use register as an implementation of the Alliance Data use register standard, to provide a best practice example of how information of approved data uses is shared and managed, and support data custodians to meet the principles of transparency, as outlined in the Alliance Letter of Intent. To date, over 1000 data uses have been added to the Gateway data use register. Contact to discuss implementation of the data use register standard.  

Recommendations and Outputs 

The Alliance is supporting the findability, accessibility, interoperability and reusability of data through the development of various tools and standards. Its papers and publications include: 

Output Type  Publication Type  Date Published  
Transparency of access and data use   Five Safe Data Access Request Application Form  Feb 2022 
The Gateway data use register: an implementation of the standard, via the Innovation Gateway  Jan 2022 
Improving Transparency in the Use of Health Data for Research: Recommendations for a Data Use Register Standard  Jan 2022 
Data Standards  Recommendations for Data Standards in Health Research White Paper  Nov 2021 
Data Standards Green Paper  Jun 2021 
Principles for Data Standards  Jun 2020 
Data Utility   Data Utility Framework Green Paper  Nov 2020 
Data Utility Framework  Nov 2020 
Metadata Specification   Metadata Specification for Innovation Gateway  Feb 2022 
Metadata Specification to Support Gateway Minimum Viable Product  Nov 2019 
Trusted Research Environments   Principles and Best Practice for Trusted Research Environments  Dec 2021 
Trusted Research Environments (TRE) Green Paper  Jul 2020