Governance of the UK TRE Community#
Overview#
Summary#
The discussion centred about the purpose and governance of the community, trying to reach a balance between conveyors but still provide enough content and direction not to be an “empty” place.
Universal selling point of UK-TRE: Diversity of audience, and pragmatism: people that are doing something. Danger of just listening is you don’t share your existing knowledge of what will/won’t work.
Should we put out position statements? Say things if you don’t like something? The community should reach a point where what we say is respected. More powerful than individual submissions.
What should UK-TRE do? Be careful not to become just a bureaucratic institution that has some funding, people, writes reports.
Maybe a network that feeds up to DARE/HDR/ADR? USP would be it’s practical, diverse, not duplicative, ideal audience for people at top to bounce ideas off. Proper focus groups would be much more expensive.
Some funding for the community to organise meetings like this is needed.
Next steps#
Secure funding for person time for the community
Establish a steering group for the community
Raw Notes#
UK-TRE: Aims, purposes, should it take on a political/advocacy role?
NHS: already have their plans for Governance
but looking promising so far
Datapact: Part of Data saves lives policy
Not policy, but saying how NHS will treat your data
Don’t want to force too much information on public: they’ll think you’re trying to hide something
Public engagement: not just telling them what will happen, instead enable citizens to make policy decisions
Interest in academia about what to do, waiting for NHS to give guidance
UK-TRE should we lead, not just follow NHS
Lead, provide input
TREs are for much more than just healthcare data which NHS focusses on
Universal selling point of UK-TRE: Diversity of audience, and pragmatism: people that are doing something
Danger of just listening is you don’t share your existing knowledge of what will/won’t work
Should put out position statements? Say things if you don’t like something? The community should reach a point where what we say is respected. More powerful than individual submissions.
Industry groups such as ABPI, BIO
Provide inputs, write reports, represent a community and a voice
Organisations need to sign up to show support
Sign-up to UK-TRE? Or to position statements created by UK-TRE?
E.g. IET (engineering professional institution) members can say what they’re interested in on their profile. IET may respond to a Government consultation by asking members for input, and collating responses.
Working groups/focus areas
Needs resource/funding
Does UKRI have something?
Beyond UKRI, commercial?
GA4GH:
multiple levels of slices of funding
100s of organisations across 80 countries
What should UK-TRE do?
Be careful not to become just a bureaucratic institution that has some funding, people, writes reports.
Balance
Maybe a network that feeds up to DARE/HDR/ADR?
USP would be it’s practical, diverse, not duplicative, ideal audience for people at top to bounce ideas off
Proper focus groups would be much more expensive
Some funding for community to organise meetings like this
Roadmap plan#
Questions#
What would a solution to this problem look like?
Ensure meetings remain attractive, not too officious
Lightning talks good, reduces duplication
Networking opportunities
Long lunch
People willing to invest time to travel
“Stir people up and let them go”
Beach! 🏖️
No different from what we’ve got now
More recognisable branding
A home? What does “home” mean?
A formal recognisable figurehead
What resources would be needed (people, time, funds, infrastructure etc.)?
Funding for someone to be a formal chair of UK-TRE
Neutral funding for someone to run community, not funded directly by a single institution
Maybe multiple people? E.g. coordinator, chair, community manager (junior/senior?), technical?
Elected chairs to propose direction/funding? Probably too much.
Instead have a steering committee
How can this community support you in getting them?
What working groups/orgs are already working on this, if any? How can we collaborate with them effectively?