---
tags: rse-tre
---

# NHS SNSDEs Talk shared notes
**Topic:** Funding and Sustainability
**Speaker:** Simone Croft, Sheffield

## Talk notes
SDE = Secure Data Environment
SNSDE = Sub-National SDE

### Background and context for introduction of SDEs
* Simone manages a project called Data Connect
* Why is the NHS creating SDEs? Multiple reports on safe, effective use of data for research and development.
* UK government [Life Sciences Vision](https://www.gov.uk/government/publications/life-sciences-vision)
* [Data saves lives: reshaping health and social care with data](https://www.gov.uk/government/publications/data-saves-lives-reshaping-health-and-social-care-with-data/data-saves-lives-reshaping-health-and-social-care-with-data)
* [Putting data, digital and tech at the heart of transforming the NHS](https://www.gov.uk/government/publications/putting-data-digital-and-tech-at-the-heart-of-transforming-the-nhs/putting-data-digital-and-tech-at-the-heart-of-transforming-the-nhs)
* [Secure data environment for NHS health and social care data - policy guidelines](https://www.gov.uk/government/publications/secure-data-environment-policy-guidelines/secure-data-environment-for-nhs-health-and-social-care-data-policy-guidelines)
* [Goldacre review](https://www.gov.uk/government/publications/better-broader-safer-using-health-data-for-research-and-analysis) - how can we make healthcare data more accisible and safer to work with?
* 185 recommendations covering how to do this in terms of platforms, security, governance, knowledge management etc.
* Feeling at the time - recommendations v useful, but some maybe difficult to enact. Nevertheless a blueprint to move forwards
* Some recomendations seemed difficult to enact -> How do we produce recomendations/specifications that can be implemented technically and organisationally? For discussion.
* £200M investment to support using NHS data for research
* A new secure environment for NHS data that will be THE environment to access all NHS data
* Previous options for accessing NHS data for research can be challenging

### National NHS SDE
- Based on the [5 Safes Framework](https://blog.ons.gov.uk/2017/01/27/the-five-safes-data-privacy-at-ons)
- People will be able to access *essential* **deidentified** data.
- NHS SDE is for having a national view of data, where people can pull datasets across several regions
- The default way to access NHS digital data.
- NHS doesn't want data to leave the NHS
- It would be good to understand what NHS means by that; not leave the HSCN?
- SDE will be a complete end-to-end service
- Simone not yet seen what the national SDE looks like to use

### Sub national SDEs
- Interoperable network supporting data access at a significant **regional** scale
- Combining health & social care outcomes (as well as NHS services, spending, performance etc.)
- Criteria for become an SNSDE
- Had to cover multiple Integrated Care System (ICS) footprint with ~5 million patients
- Covering all England across the set of SNSDEs
- NHS owned, led by Integrated Care Provider (ICP) with local universities
- Came in two waves (wave 1 were up and running already, wave 2 needed more time to get themselves together)
- Wave 1:
- London
- North West
- Thames Valley and Surrey
- West Midlands
- Wave 2
- East of NEgland
- Easy Midlands
- Great Western
- Kent Medway & Sussex
- Yorkshire & Humber
- And more...
* Yorkshire & Humber
* Leeds, Sheffield, York Universities
* Led by Bradford Teaching Hospitals
* Remit to submit operating model by end of March, once approved can start putting these things into action

### Main challenges
* Cross-regional operability
* E.g. if someone from Devon ends up in hospital in Yorkshire, how can their data be accessed effectively
* Project Emerald
* Federated data
* Cross regional/national view
* Federated analysis very tricky
* Different organisations have difference governance
* Different organisations record data differently
* Hard to do complex research. In pilot had to greatly reduce planned complexity of the research.
* Lots of unpicking of how to share data across/between regions
* Reduce complexity?
* Data linkage tricky
* Varying data quality
* Varying consistency with amount of data collected, how data is collected / coded etc
* Varying governance models
* Work with HDR UK?
* Very important for research
* CEO from Boots gave a keynote talking about the data they are collecting and how they were starting to think about using that more effectively.
* How can this kind of data be linked for secondary use for research?
* Boots data consented (vs often using unconsented routinely collected NHS data for research)

### Opportunities
* Governance
* Can we standardise e.g. how things like DPIAs are done, to make connecting multiple ICS's easier
* Subnational - regions, across multiple ICS
* Nationally - HDR UK working on a TRE toolkit with harmonised documents, approaches
* DARE SATRE project working on TRE standards ([DARE project page](https://dareuk.org.uk/driver-project-satre/) | [GitHub repository](https://github.com/sa-tre) | [Project blog](https://medium.com/satre))
* [name=Chris Cole] Point of clarification: SATRE is a collaborative project led by University of Dundee with Turing, UCL, University of Ulster and Research Data Scotland, HDR UK plus lay participants in the research team. (Slides say Turing SATRE)
* Harmonise across health and social care - different challenges
* Data
* Harmonising how data is coded across settings (e.g. OMOP, GPs)
* Private vs public services (e.g. dentistry spans NHS + private providers)
* Social care much more complex. e.g. different housing providers may collect data in totally differnet ways
* PPIE
* Same public concerns and issues
* Regional, national co-production and sharing

### What can we do?
* Knowledge sharing - repos, exemplars, good practice
* Pilot work - develop ideas, proof of concepts etc. Can these be scaled nationally/sub-nationally
* Communications - with public, with groups working on similar things

## Discussion Notes
* Is your pilot study the one that was done with GEL? If there are write-ups that would be great!
* (GEL=Genomics England): No
* [DARE UK exemplar project on TRE Federation: GEL + NIHR + Lifebit](https://zenodo.org/record/7085536#.ZCQ-nezMJ46)
* 'Owned by the NHS' aspect. How does this work in practice? Does NHS want to run and own TRE in entirety, or are they run by e.g. yorkshire/humber?
* led by NHS, the data is not to leave NHS. Infra in place by NHS. Data Connect (Simone's service) is a front door into that, researches access through them
* Researcher access would have to come through Yorkshire/Humber
* Look at [EHDS](https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en), The EU is mandating interoperability of health data across the EU...!
* NW SNSDE is being led by Lancs teaching hospital but SDE probably led by an NHS services provides.
* How does the new model where all NHS data remains in the NHS SDE(s) how is it linked with other datasets for research projects not just using NHS data? In SNSDEs? All into the national SDE?
* [name=Simone] Not sure. Have similar questions. Feels like national SDE replaces NHS Digital now and likely to be where linking happens. Attended a demo of the national SDE but not overly clear how linking will work.
* Last I managed to talk to them there was a lot of shrugging around bringing data into the environment, and no real answers about linking between multiple environments (e.g ONS Data + Health data or Welsh NHS data)
* DARE UK exemplar project on TRE Federation: GEL + NIHR + Lifebit on data federation - [link](https://zenodo.org/record/7085536#.ZCQ-anbMLb1)
* when they say that data goes to NHS secure environment, what does this mean? that it goes to a TRE, to a set of laptops?
* Generally came out to another secure TRE-like environment.
* At a national level, requests via DARS (Data Application Request Service: https://digital.nhs.uk/services/data-access-request-service-dars) to NHS Digital (now NHS England). Data collected centrally at NHS Digital from various NHS Trusts in common format. Can also arrange direct data sharing agreement with an NHS Trust. No common governance across all Trusts. Concerns about a "leaky bucket" with so many pathways to access data. Feels want a clearer handle on where NHS data is held so NHS has more confidence.
* For many years data download from the CPRD was the mechanism. There's a big push towards TREs and away from data download now, of course :-)
* 'Nothing leaves the NHS SDE' was the statement at a recent conference. Which means lots of complex data needs to go *into* the NHS SDE, which means thousands of new projects to support, some with complex/real-time links etc, and even more complex data governance issues - which Unis have tried to support for a while.
* CPRD is GP data, which is not in NHS Digital in big amounts (yet).

## Actions/next steps

* X
* X
* X

## Working group sign-ups
Folk who joined the breakout rooms

### Open source TREs (room 1)

### Community management & engagement (room 2)

### Funding & Sustainability (room 3)

### Information Governance (room 4)