Multi-TRE

docs/events/wg_workshops/2023-12-05-december-meeting/discussion-multi-tre.md

@@ -13,4 +13,53 @@ This breakout will discuss whether and how a common governance model can be achi
 
 ## Summary
 
+The [Swansea paper](https://ijpds.org/article/view/2164) was referenced, highlighting how it found that the problem of multi-TRE analysis can be addressed.
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+The question was then asked - how do you get there, in a trustworthy and safe way?
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+It was discussed whether an entirely new framework was needed, or whether existing arrangements can be adapted, and whether solutions should exist within TREs, or new TREs shuld be built.
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+Many next steps were discussed, with a special focus on lobbynig as a community to government, data providers and policy makers to move towards a more common, aligned approach to data provision and research.
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 ## Raw notes
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+- Variation in data governance arrangements result in silos, barrier to federated analysis across data held across multiple TREs
+- Review of TREs involved in federated collaborations (?) and their governance arrangement models: https://ijpds.org/article/view/2164
+- Conclusions of the paper: problem _can_ be addressed considerably through adoption of a common governance model
+- How do you get there?
+- To change existing models and cultures are hard
+- Participating with another legal entity the responsible party will still stay the responsible party
+- In a joint partnership the new model have to distribute the risk across the partnership group
+- MRC example by Paul Colville-Nash: accessing GPs in 4 nations. relationship between parties
+- Infrastructure requirements can be quite different, standardisation would need to encompass these
+- Old TREs have very similar model but the different naming
+- How are we get there? and how it all works?
+- How do we think the world works? do we bring data to researchers or researchers to data?
+- What feels more trustworthy from data owners view
+- How safe are the existing TREs?
+- How a structure can enable multi-TRE collaboration
+- Are there examples where this has been done successfully?
+- Use-case with rare disease where large sample size needed (but needed complex sharing agreements)
+- COVID: federation was not solved
+- Funder looking at global population level
+- To what extent do we need a completely new framework, if changing existing arrangements is too hard? Ripping up existng governance arrangements carries risk of undermining trust.
+- should we moving with faster speed in this space? getting any type of data takes time and we may need to let time solve things
+- Funders would challenge establishment of a new TRE
+- the wave is changing to establishment of TREs inside TREs with shared governance models
+- the existing TRE is a free market, should we and do we want to introduce new 'TRE products' _within_ existing trusted TREs, that are designed around ability to federate/carry out multi-TRE analyses. That way data providers beenfit from the experience of the established host TRE. This can enable a gradual migration from one governance model to another without needing to rip up entire TRE governance model (analogous to a software migration). Can start with small number of such TRE2.0 products and expand more organically (land and expand).
+- traumatic brain injury hub is a secure dataset which is living in a separate hub within DPUK
+- is this a tailored access model per dataset? We need to separate out the data set from the access and analysis of them - SDE vs TRE. And then allow the existing IG to see how the new approach is a small acceptable growth.
+- TRE operators have to convince data providers not just to provide the data, but also to curate it and document it, repeated n times, all required before you can provide the data to a project. Onus on data owner not consistent, in ST's experience this is almost always done by the TRE. Very costly to undertake.
+- 'Ground truth' of datasets/versioning if multiple versions are held across different TREs?
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+### Next steps
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+- Bringing the governance models close enough to eachother to be harmonised enough to give FAIR data as the way forward
+- to build a communication line between the legal entities called 'Data Owners' giving their data to 'Data Providers' to facilitate a balanced risk and outcome delivery **Primary objective in this model is to reach to a balance and lower cost**
+- Talk lines between TRE-community and government for impelementation of regulations
+- For specific use cases we have achieved it, where to go next is how ot expand the solutions to a more general population-wide use case in multi-TRE work
+- Streamline a repeated process for provisioning data via different paths
+- In some sense we have the opportunity it feels. ie Cloud based models offer a way of rebuilding new
+- Get rid of different instances of similar entities in a cloud environment
+- Adoptation of the existing models (or creation of a new one???)
+- We as a community need to be lobbying for a change of focus for data owners / controllers to make sure that they recognise that they have a purpose and responsbility to make the harder research problems possible, the time to research fatser and the costs to do the research lower (time and £). If not this community then who? We need to act as a lobbying function into government policy makers.