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?