Merge pull request #72 from manics/dec2024

Add notes for Dec 2024 event

docs/events/wg_workshops/2024-12-03-december-meeting/index.md

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+# UK TRE Community meeting - December 2024
+
+:Date: [Tuesday 3rd December 2024](https://arewemeetingyet.com/London/2024-12-03/13:30/UK%20TRE%20Community%20meeting)
+:Time: 13:30 - 17:00
+:Registration: https://lu.ma/qzl407g2
+:Location: Online
+
+## Agenda
+
+| Time          | Agenda Item                                                                                                 |
+| ------------- | ----------------------------------------------------------------------------------------------------------- |
+| 13:30 - 13:45 | Welcome and intro                                                                                           |
+| 13:45 - 14:00 | Community updates (including funding)                                                                       |
+| 14:00 - 14:20 | Working Group updates (including intro to new IG WG)                                                        |
+| 14:20 - 14:30 | Break and coffee refill :coffee: :duck:                                                                     |
+| 14:30 - 16:55 | What does the public want, how does PPIE help and what is good practice? Presentations and Panel Discussion |
+| 16:55 - 17:00 | Wrap up                                                                                                     |
+
+:Video recording: Coming soon
+:Slides: Coming soon
+
+As always these notes were written collaboratively by multiple members of the community.
+
+## Community updates
+
+- Skills network bid not submitted due to proposed PI not suitable (UKRI decision)
+- SATRE and IG Interest Group bids made to DARE funding opportunity. Decision soon.
+  - IG Interest Group: led by Kate O'Sullivan, Amy Tilbrook, Pete Barnsley. Group will be linked to main UK TRE community. If bid not successful, then will look to establishing in amended way. Aim to bring knowledge together and develop good practice across TREs (links to TRE federation ambition). Need to secure a public member co-chair (skills and experience to be defined), develop a conference, set up a web presence, seek public perspectives on specific TRE IG issues. Thanks to individuals and organisations who have supported initial development.
+- Funding and Sustainability WG update: 28 Jan 2024 1130-1300
+  - Register now! https://lu.ma/gfbcw4rt
+- March event: either Wed 12th or 19th, Information governance
+- June event: either 12th or 19th: Funding and sustainability
+- Annual conference in Sept 2025 - hybrid intention (1 day)
+
+## Working Group updates
+
+### Glossary
+
+- Glossary v0 spreadsheet (incorporates content from various baseline sources): https://docs.google.com/spreadsheets/d/1qublBBkpYpNgwKm5HPFD1F7WPvaYaBpY/edit
+- Last set of minutes from November https://hackmd.io/zmrO0VBbR4Oo4JNqJ0cJQA
+- Group open to new members, meet every fortnight: _"Glossaries: what's not to like?!"_
+
+### SATRE
+
+- How it could be developed to support federation is a major/relevant challenge
+- Any ideas will be circulated for feedback in the community via collaboration cafes and other ways to contribute
+- Looking at best long-term governance model, considering accreditation. Looking for agreement/consensus from the community
+
+### Funding and sustainabiltiy
+
+- Set up survey on costs of running TRE and funding achieved for making systems sustainable and the types on things ch=arged for
+- Survey conducted in the summer found there is a lot of funding coming in but it is mostly academic cf commercial.
+- NHS England has agreed to talk to the community about the subnational SDE commerical capability they are building, with commercial funding models
+- Pete is now co-chair.
+
+### SDE TRE Definitions
+
+- Satisfied with what the WG has achieved - differences and similarities between SDE and TRE
+- Dividing elements of both environments into research and data "zones"
+- Worked out where there were points of disagreement in language and developed consistent language to describe architecture.
+- IG is locked to either type and needs to be modified for "zone" terminology
+- Report due Q1 2025.
+
+### Extending Control
+
+- Drafted "request for input" for recipients as Technology Players (Azure, AWS, Snowflake)
+
+### Questions
+
+- "zone" terminology - what are they zones of?
+- Can you give an example of how the zones work within the ongoing SDE and TRE definitions efforts?
+  - Think about it as a supermarket: There is a WAREHOUSE area in the back of the store where the bulk goods are stored, and the STORE component where shoppers are and take goods off the shelves.
+    OR data zone = back-office where info gov people prepare datasets for research; research zone = front-office where researcher gets access via a (virtual) desktop
+- HDR UK and a few others (as a result of public engagement work) have started to raise raise questions around the use of the word "Trusted" in Trusted Research Environments, they say it is up to the public to decide if they trust the processes rather than labelling yourself as Trusted, as a result are promoting the term Secure Data Environment. ([Trusted Research Environment - a name to trust? - Journal of Medical Ethics blog](https://blogs.bmj.com/medical-ethics/2022/11/14/trusted-research-environment-a-name-to-trust/)). Is your survey saying that TRE's and SDE's are fundamentally different?
+  - Good question! "SDE" was settled on by NHS England (and perhaps HSC NI?) for exactly that reason. However, not every SDE in the SDE network interprets SDE the same way (some are pure data zones, some both data and research), AND TRE has such a lot of "brand recognition" in the community, rightly or wrongly. Whether our community can be the final arbiter is one to ponder...
+  - The label 'trusted' begs the question who is doing the trusting and on what basis? "TREs" should be focused on being as trustworthy as possible: it's up to others to decide if they trust it or not...
+  - Changing the name will be difficult, but that's what part of the conversation around SDE/TRE is attempting to do anyway. And we shouldn't accept the status quo if it is wrong!
+  - Follow-on question: what is a realistic expectation for this community to have when it comes to influencing topics like this against heavyweights such as the NHS, ONS, UK/devolved Govs?
+
+Next SDAP event: Tue 10 Dec 2024 10:00-12:30
+
+- Development of Assured project so far
+- Information Governance
+- Researcher Registry project
+
+## What does the public want, how does PPIE help and what is good practice
+
+### Tudor Besleaga
+
+- PPRG: Patient and Public Review Group
+- PPIE requires sustained involvement- ill health may cause people to pull out, resulting in bias of who's represented
+- For patients just having received a diagnosis it could be beneficial for them to be able to discover, quickly, whether there are others in their situation, whether researchers are actively working on the disease, etc.
+  - Data visibility (Patient portal, Research registry)
+- Suggested book: Rebel Health by Susannah Fox
+
+### Sadie Myhill
+
+Deliberation
+
+- Way to get considered public input with help of experts guiding discussions
+
+Principles:
+
+- Some degrees of contention that require discussion/tradeoffs
+- meaningful opportunity to influence- there's a real decision that has to be made
+- ability to meaningfully engage- not too technical
+
+#### Samaira Khan
+
+Public Engagement Data Research Initiative (PEDRI)
+
+- Public understand their data is being used, but aren't clear on how
+- Wording is important (e.g. transparent vs transparency can be misunderstood)
+- Good practice standards
+  - Not "best" because there's always room to improve
+
+### Chris Carrigan
+
+use MY data
+
+- completely independent patient movement focussed on use of patient data
+- originated from care.data failure: researchers were hampered. When patients heard about problems researchers were facing they wanted to do something
+- need to support any member of the public enough for them to be an active member - use MY data provide training or mentoring every 3 weeks - if you want to run one, speak to Chris.
+- 24 June 2024: use MY data National Patient Data Day Conference (#NPaDD2025) https://www.usemydata.org.uk/content_db.php?page=1645
+
+## Discussions
+
+- Mostly discussed patient involvement, but the frameworks and guidance we've discussed are also applicable to working with researchers too
+- how to ensure there's enough funding for meaningful public engagement which might amount to providing input and advice on a research project?
+- training required for people working with members of the public (rather than public themselves), to allow the lay members to remain lay. This is not about speeding up meetings and cut time for Q&A by allowing people to discover the basics while they go.
+- PPIE often white middle class retired people - who have time and money. Need to pay reasonable compensation for people to take half or a whole day off to avoid this. Rework of how and how much people are paid to get involved in order to get real representation.
+  - Could hold sessions outside standard work hours?
+  - offer evenings and weekends - but also asynchronous engagements where the members can enter text/images at any time of night and day. I’ve used this and found it to be highly successful
+- How to recruit new members of the public?
+  - Could we learn from/join forces with recruitment strategies from large consented research studies (e.g. generation Scotland, Our Future Health )
+    - There are groups out there who are good at this sort of thing (I recall DataLoch had good experiences with Ipsos), but they can be expensive and it's not always obvious how these costs can be subsidised. Or is that easier than I think?
+    - Costs are a significant issue: there needs to be budget to recruit and involve members of the public in a purposeful way, rather than being under-estimated. For a recent expansion of our Public Reference Group we collaborated with the Sortition Foundation to seek a broader diversity of potential members. (They had done something similar for the RDS/SCADR panel: Scotland Talks Data.)
+    - there is nothing intrinsically in UKRI funding rules that say you couldn't ask for those costs in an application.
+    - pre-application costs would not be claimable. We don't have a pot people could tap into for such as this so would be tapping into other resources - appreciate that all organisations/researchers stretched
+    - As with all of these things, the project leads need to budget for it in the first place (challenging when lots of other things need funding) and the reviewers need to understand the value of the funding ask. If the project will get funded without a high-quality, appropriately funded PPIE element, then what is the stick for project leads to prioritise this over other parts of the application
+    - panels I work with are looking at this increasingly hard and poor PPIE can be a point of uncompetitiveness, even an eligibility fail as some calls require this to be developed to a high degree. We are doing more thinking about this, we've tried a few different approaches and need to learn lessons
+- Put together group as a social group as well as a discussion group to encourage friendly disagreement rather than antagonisation, and prevent factions forming
+- Public support for TREs/SDEs is often said to be the primary blocker, but budget for public engagement is "pitiful" compared to SDE budget
+- PPIE as Jury Duty?
+  - Could we ride the coattails of the Sudlow report and get a big TV debate to get people interested?
+- Completely green people? Would need to be trained
+  - Completely green people often come up with interesting questions
+- Why do we do PIE? What is it about federation?
+  - Gain support for work, trust
+  - Helps to improve work, things we've missed
+  - Health Research Authority has published on why public engagement and involvement is important - obviously doesn't just apply to health research: https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/ - spoiler - it makes better research.
+  - Patient benefit
+- Perhaps different levels of engagement and trust; I think we're still lacking a societal level debate to back up some general principles even perhaps/if only at the level of data sharing in the public good is generally acceptable, not sharing can carry harms (as earlier) so we can develop an understanding of societal risk appetite, but at deeper project levels the conversation/focus would be clearly different. Some might think we do have this already?
+- I would like to hear from someone from Palantir, since they won the bid on building this federation
+  - Worth reaching out to the Patients Association who produced this (?): https://www.patients-association.org.uk/News/patient-data-in-the-nhs
+- Follow the YouGov(?) or equivalent model of people signing up and joining focus groups/surveys, and receving a small payment
+- Citizen juries: highly structured and representative
+  - Same idea was suggested in a European meeting
+  - Citizen’s Assembly model: https://citizensassembly.co.uk
+  - Need to ensure everyone has an opportunity to speak, not dominated (needs skilled/experienced facilitation)
+- Regarding refreshing public panels: if the ethos of the panel is to be collaborative (i.e. reducing the power imbalances), it is possible to 'ease' group members out of the group in a way that matches that ethos? (Without setting a time-limit in advance of joining!!)
+  - Easier to state maximum time-limit up front
+    - But could offer people the chance to become a facilitator if they want to do more, or act as mentors, etc
+  - Groups need boundaries to function well
+- when projects end, public members can feel thrown away and not further engaged with or have further opportunities to engage
+
+## Wrap-up
+
+**Actions for everyone**:
+
+- Join the working groups!
+- Please email/slack any co-chair if you want to join that CMWG team

docs/events/wg_workshops/index.md

@@ -5,8 +5,6 @@
 ```{toctree}
 :maxdepth: 1
 
-2024-09-02-september-meeting/index
-2024-12-10-december-meeting/index
 
 ```
 
@@ -15,6 +13,8 @@
 ```{toctree}
 :maxdepth: 1
 
+2024-12-03-december-meeting/index
+2024-09-02-september-meeting/index
 2024-06-05-june-meeting/index
 2024-03-14-march-meeting/index
 2023-12-05-december-meeting/index

docs/index.md

@@ -10,11 +10,10 @@ background/index
 structure/index
 ```
 
-```{admonition} UK-TRE December 2024 online meeting
+```{admonition} Members survey
 :class: attention
 
-[Register for the UK-TRE December 2024 meeting](https://lu.ma/qzl407g2) (13:30 - 17:00 Tuesday 3rd December) now!
-[⏰ Agenda](events/wg_workshops/2024-12-10-december-meeting/index).
+Please fill in our [UK TRE member's survey](https://docs.google.com/forms/d/e/1FAIpQLSecCwo4AeVi3TcvKMzu5b_1AVf1HozZ8pDjNzxPy5AXODWeQA/viewform) so we can make sure our future activities meet your needs.
 ```
 
 Welcome to the site! This site contains resources, reports, meeting notes, discussions and more associated with the UK Trusted Research Environment Community.