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.
The best next step, before anything else, is to establish better connections with the NHS SDE network.
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
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
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?
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?
Each individual SDE
Southern consortium of SDEs
NHSE in flux: National SDE: Michael Chapman
Handwritten notes from day#
Building upon successes; learnings of TREs for SDEs
Remit of NHS and other data sources for SDEs
What it means to continue to manage Independent TREs (and to build solutions for TREs)
Addressing data silos as well as cultural components to evolve TREs/SDEs
Data exhange opportunities and the potential for increased NHS data in existing TREs
Guiding principles for integration across TREs
National (English) GP data access oportunity
Cohesive strategies/approaches with SDEs launches
Potential roles for other stakeholders and access to open source assets
Aligning to standards/protocols for data access, designing commercial & sustainability cases
Outstanding questions for data controllers vs data providers
SDEs: variety of build, buy supplier decisions underway
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
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
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
setting expectations on the level of effort/amount of time needed for data linkage across several organisations
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?)
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)
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
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
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
risk of systematised data collection + analysis leads to clinican performance management and overhead (“professional mistrust”)
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)
What’s workign well: role of HDRUK / UK TRE Community
Vision + strategy
Common principles, protocols, assets
Expanded communities of practice + knowledge share opportunities -> Consider national, regional, local links
PPIE approach + building trust/confidence with the clinical communities
Workpackages/What would be helpful:
Clear vision/value story on why TRE+SNSDE add/evolves
One pager on key protocols, ways of working + frameworks to strengthen consistency of messaging
Alignment of related data programmes (eg R+D vs FDP)
Community of practice + shared assets/lessons/insights so SDEs build on TRE success to date
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