TELEPORT Public Involvement and Engagement Final Report

Health and administrative data about people resident in the UK are generated by the NHS, government and other organisations, and subsequently held in different locations across the UK's four nations according to devolved legislation and governance. Trusted Research Environments (TREs) were developed by partner organisations, in academia, within the NHS, by government agencies, and in some cases by commercial companies, to safely store this data and control access to it for research purposes. Across the UK, de-identified data is typically available for research via these TREs, however each TRE houses specific data based at different institutions, which adds difficulty to a researcher's task of trying to gather a full picture of scientific outputs for the entire nation, simply because of the replication needed to analyse all available data across the country. Researchers often want to study data from the whole of the UK to improve the quality and accuracy of their research, as well as providing UK-wide outputs in ongoing science.

 A solution to improving UK data access and efficiency for researchers is federated data access, which enables parallel access to data housed in multiple physically separated environments (without data moving from their host environments, instead being accessible from its host location to a researcher in a single safe, secure environment environment) where researchers can see the data required for their research projects. 

Teleport is starting the transformation of traditional TRE access to data by partnering the custodians of national level data in Wales and Scotland (SAIL Databank and Scottish National Safe Haven respectively), and the technology providers of the TRE platforms (the Secure eResearch Platform (SeRP) at Swansea University and EPCC at the University of Edinburgh). By making the data, initially from the two countries above, accessible by connecting their TREs, researchers could, for example, have better facilitated access in order further understand groups with rare diseases and generally increase the quality of research in more common conditions – by increasing the sample size from being only Wales (3.3 million) or only Scotland (5.5 million) to over 8.8 million people accessible in a single environment, rather than having to run multiple disparate analyses. It is also a starting place for more efficient study across the UK, which promotes the move away from duplicated research taking place in siloed environments. This could lead to better health outcomes due to the increase in scale, granularity, and connectivity of data available. Both countries in scope for Teleport have national-level data holdings of complementary scale, and research infrastructure which is of equivalent maturity to be able to deploy, test, and develop the proposed access solution, which is where Teleport is at its strongest in terms of connecting environments to facilitate multi-TRE analyses.

 DARE UK is coordinating "the design and delivery of a coordinated and trustworthy national data research infrastructure to support cross-domain research for public good". This aim ultimately means funding projects to produce technical developments which will enable existing data providers, TREs, and other technical platforms to be integrated and interoperable, providing efficiencies for researchers to access data and run studies to produce scientific outputs which have meaningful public benefit. Teleport supports this model by providing a technical solution which attempts to introduce as few changes as possible to existing operating frameworks for TREs, frameworks which have become trustworthy over many years of fine tuning, development, and public DARE Teleport Public Involvement and Engagement Report | 2 engagement. Researchers ultimately need federated analytics solutions which can be accessed and used as seamlessly as possible, and with a relatively low learning curve in terms of their operation so as to appeal to a wide variety of research skill sets. Teleport is attempting to do this by focusing on back-end technical solutions which deal with networking, software deployment, data governance, and security, without any of these burdens falling onto the researcher, who subject to governance approvals should be able to access data from multiple TREs using software sets they are familiar with (perhaps with small amounts of learning involved for certain processes). 

Teleport is also complementary to other DARE UK projects which are aiding in the development of the national data infrastructure, particularly in how it could slot into projects such as TRE-FX which is designing another federated analytics solution, SACRO which is providing a framework for the semi-automation of output checking, and SATRE in terms of evaluating how Teleport (or at least the contributing TREs to Teleport) can be evaluated in terms of their compliance with a national standard for TRE architecture. 

Public involvement and engagement is integral in ensuring that the proposed solution actually delivers public benefit and impacts patients and the public positively. Whilst Teleport is providing an initial pilot solution, ensuring that the public are broadly comfortable with the approach of working across multiple TREs, data essentially connecting across nations/providers as a result, and that the solution can actually enhance research and outputs feeding back into direct care and societal change, are of key importance from the Teleport perspective.