The role of independent TRE providers in relation to the NHS national and regional SDEs#



This discussion made evident the multiplicity of current efforts and the difficulty to know what is happening in this space or the direction it is taking.

The discussion identified many potential areas of work and collaboration, the use of NHS data held in SDEs via specific TREs can expand the utility of this data but requires a lot of coordination, not only between independent TREs but also across regions and institutions. Challenges arise on how to make this coordination and alignment effective, reconcile different interests (commercial and public) and ensure public and clinicians’ trust.

The role of HDRUK and the UK TRE Community is seen as a positive influence.

Next steps#

  • The best next step, before anything else, is to establish better connections with the NHS SDE network.

Raw notes#


  • What’s your interest in this topic

    • Interested to know how this will work

    • Supporting some SNSDEs: how do we build on existing work?

    • SNSDE project: want to work beyond NHS

    • Commercial provider of TREs: where are we going?

  • How are the national and regional SDEs planning to work with each other, and with other TREs?

    • Southern consortium: Wessex, Bristol

    • Standardisation on governance and data access

    • Competition: need to be sustainable

  • What does sustainability look like?

    • Charge for private/commercial access

  • What are the limitations of the national and regional SDEs?

    • Combining datasets from different SDEs

    • Federation?

    • Distrust of other infrastructure solutions

    • Duplicated governance requirements

    • Follow-up of cohorts with people who might have moved between areas

  • How can data linkage avoid reidentification?

    • Section 251 means this can be allowed

    • Consent is a moving process

    • Influence on national data opt-out

  • Should an accredited non-NHS TRE be allowed to hold NHS data?

    • Use-case for holding pan-UK data

    • Onus on the TRE to adhere to NHS standards

    • Questions of public trust

    • What’s the business case that no other TRE could provide?

  • What assurances could/should a TRE be providing to the NHS?

    • Reduce number of TREs: worst ones will bring down confidence in others

    • Duplicative of effort and money

Roadmap plan#


  • What would a solution to this problem look like?

    • Uncertainty about what’s going on

    • Uncertainty about how to do future collaborative work

    • NHS England working groups exist: a bit siloed

    • HDR UK doing a good job

    • Why are there SNSDEs at all?

      • Access to primary care data

      • Start from different starting points

    • What happened to the NHS Data Pact?

  • What resources would be needed (people, time, funds, infrastructure etc.)?

    • Need to interact better with the NHS e.g. on researcher requirements

  • How can this community support you in getting them?

    • Awareness

    • Collate information about who’s doing what, try to avoid duplication.

    • Contact person for researchers working on independent TREs

  • What working groups/orgs are already working on this, if any? How can we collaborate with them effectively?

    • HDR UK

    • Each individual SDE

    • Southern consortium of SDEs

    • NHSE in flux: National SDE: Michael Chapman

Handwritten notes from day#

Potential areas

  1. Building upon successes; learnings of TREs for SDEs

  2. Remit of NHS and other data sources for SDEs

  3. What it means to continue to manage Independent TREs (and to build solutions for TREs)

  4. Addressing data silos as well as cultural components to evolve TREs/SDEs

  5. Data exhange opportunities and the potential for increased NHS data in existing TREs

  6. Guiding principles for integration across TREs

  7. National (English) GP data access oportunity

  8. Cohesive strategies/approaches with SDEs launches

  9. Potential roles for other stakeholders and access to open source assets

  10. Aligning to standards/protocols for data access, designing commercial & sustainability cases

  11. Outstanding questions for data controllers vs data providers

  12. SDEs: variety of build, buy supplier decisions underway

  13. SDE potential limitations: reconciling differences across regions based on decentralized protocols (eg. neutral grant for data); governance challenges-risk of redundancies, inefficiencies, slow decision making; need for coordinated mechanism for cross-SDF initiatives

  14. Big question about incentives: collaborative vs competitive mindest. Clarity on who is tackling what, and how to coordinate effectively. difficulty introducing several new entitites at once, at pace

  15. Dual focus on local stakeholder engagement/approval alongside central policy development. Specific focus on touchpoints (eg. de-ID then re-ID) and how to manage at scale- a la section 251

  16. setting expectations on the level of effort/amount of time needed for data linkage across several organisations

  17. PPIE: aligning on short term project, mid/long term vision & value, and how to sustain + grow public trust in data usage for R&D (lessons learnt from Our Future Health?)

  18. Impact of optin/opt out policies + level of participation: current state, future of TREs/SDEs and FDP ambitions (consider impact of coworking and misrepresentation of activity/outcomes)

  19. Non-NHS TREs & ability to host data (health + otherwise). Would need to comply w/ national + SDF specific policies. Consent. Complicated issue esp for longitudinal datasets, common to point at 251 in England

  20. Separating technical supplier managing TRE and ensuring data governance always remains in-house ie. with NHS organisations of independent providers of TREs. How to balance commercial activity+public trust

  21. Leading with a business case for each TRE: what it offers that others don’t, or can’t. Need to convince public + stakeholders orgs. Implications for single-use TREs vs Single TRE that persists across many use cases

  22. risk of systematised data collection + analysis leads to clinican performance management and overhead (“professional mistrust”)

  23. Main challenges: level of uncertainty, lack of policies + structures to collaborate effectively, early development of the NHSE/SNSDE Research Working Group. must PPIE for SNSDE direct to local approach; clarity on goal of SNSDE (eg GP data;imaging;trust level;-omics data)

  24. What’s workign well: role of HDRUK / UK TRE Community


  1. Vision + strategy

  2. Common principles, protocols, assets

  3. Expanded communities of practice + knowledge share opportunities -> Consider national, regional, local links

  4. PPIE approach + building trust/confidence with the clinical communities

Workpackages/What would be helpful:

  1. Clear vision/value story on why TRE+SNSDE add/evolves

  2. One pager on key protocols, ways of working + frameworks to strengthen consistency of messaging

  3. Alignment of related data programmes (eg R+D vs FDP)

  4. Community of practice + shared assets/lessons/insights so SDEs build on TRE success to date

  5. User (eg. researcher) assets: needs, goals, decisions, pain points, requirements

Resources Consider where expertise sits across: A. Independent TREs B. National influences C. National SDE [RN] D. SNSDEs E. Local researchers F. Common entities/stakeholders in health data space