Preserving public trust in the evolution of Trusted Research Environments: TELEPORT
In recent times, Trusted Research Environments (TRE) have been thrust into a period of accelerated change as the world looked for answers in ‘big data’ to bring the COVID-19 pandemic under control. TELEPORT represents the next evolution of TREs and holds the potential to transform the understanding of populations through data. For the project team, it is crucial that public trust is not eroded during this transformation by ensuring a central focus is placed on Public Involvement and Engagement (PIE).
What is TELEPORT?
Health and administrative data 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. TREs were developed to securely store this data and control access to it for research purposes. However, researchers often want to study data from the whole of the UK to improve the quality and accuracy of their research and provide UK-wide outputs in ongoing science.
Federated data access enables parallel access to data housed in multiple, physically separated environments (without data moving from their host environments, instead being accessible in its host location to a researcher in a remote, secure environment) where researchers can see the data required for their research projects.
TELEPORT is one of the five DARE UK Phase 1 Driver Projects transforming TRE access to data by partnering with the custodians of national-level data in Wales and Scotland (SAIL Databank and eDRIS, 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 from the two countries accessible by connecting their TREs, researchers can better understand groups with rare diseases and generally increase the quality of research in more common conditions – by increasing the sample size from only Wales (3.3 million) or only Scotland (5.5 million) to over 8.8 million people. This could lead to better health outcomes due to the increased scale, specificity, and connectivity of available data. Both countries have national-level data holdings of complementary scale and research infrastructure, which is of equivalent maturity to deploy, test, and develop the proposed access solution.
Public involvement in TELEPORT
Engaging with TRE governance
TELEPORT has written and disseminated a description and governance briefing document, written in non-technical language, which has been reviewed by governance panels (including lay members) from each TRE. Also included on the TRE governance panels are data governance experts who scrutinise the data access application to ensure any research undertaken can potentially deliver a public benefit. The purpose of the document was to describe what the project is building, why, and how this will improve public benefit in research, and to reassure the panel that this would not attempt to change existing trusted processes for data access.
Appointing a TELEPORT lay lead.
TELEPORT has appointed a member of the public as a lay lead to act as an advocate and public voice throughout project technical meetings. Following the early development of TELEPORT’s technical requirements, a lay lead was appointed to help communicate the work to date, including the project’s goals and how this impacts the public appropriately to a lay audience. TELEPORT’s lay lead is also writing advocacy reports detailing various parts of the project for the public involvement and engagement panels to consider.
Involvement with public panels
The TELEPORT project team attended a meeting with the SAIL Databank Consumer Panel, who offered their thoughts on the project, their perceived risks, any messages the project team needs to take on board, and how they believe this will impact patients/public groups. The Consumer Panel comprises more than a dozen members of the Welsh general public who provide a public voice and gauge the social acceptability of research using SAIL data.
Through public interactions, TELEPORT received the following feedback, which will help to shape the delivery of the project:
- The public broadly welcomes the idea of simplifying multi-TRE access.
- It was suggested that data should stay physically in its jurisdiction but should be accessible and used in accordance with governance models.
- The public is excited to see how the project will improve patient experiences and hope that it will make the research more efficient, cost-effective and quicker by having access to everything in one place.
- TELEPORT was advised to deliver appropriate messaging to data providers to outline the project’s impact on them (if any) and reassure them that meaningful data research will continue and improve as TELEPORT develops.
- The Consumer Panel recognised an opportunity for TELEPORT to broaden data access beyond traditional, national TREs to improve the benefits of other data sources for their data subjects.
- The public is excited about TELEPORT’s potential in research into rare diseases/illnesses that may have only a small sample of just using one of the nations’ TREs and recognise its potential to lead to better health policies and better condition-specific care.
- A consumer panel member recognised the broader potential of TELEPORT to connect other TREs – “A safe global data set can only help going forward.”
- The public feels more comfortable with this approach than moving the data itself.
- TELEPORT were advised to seek out other public involvement panels to ensure regional differences and concerns were gathered during its development.
Plans for public involvement activity
In collaboration with Research Data Scotland, the TELEPORT project team is also looking to gain feedback from public panels in Scotland, and whilst the TELEPORT solution is essentially geography, jurisdiction and data agnostic, given the partners in TELEPORT at present, this covers the project’s initial bases of Wales and Scotland in terms of initial public feedback.
The TELEPORT project team will also commission some pictorial/video-based content that can explain the solution and how this is delivering positive change, to be disseminated via social media, websites, and to specific interest groups.