Breakout: New research: language to use when explaining SDEs and TREs to the public#

Leads: Emma Morgan (Understanding Patient Data)

Understanding Patient Data(UPD) has recently published their final report on the What Words To Use project with Research Works, which focused on exploring the best language to use when explaining Secure Data Environments and Trusted Research Environments to the public.

Notes#

  • Emma took us through UPD project: how to explain TREs and related terms to the public, and generate some explainer materials.

  • Part 1: Rapid evidence review

    • Patients supportive of direction to data access through TREs

    • limited evidence on specific aspects of TREs

    • Commercial use of data sometimes controversial

  • Comms around TREs: explaining TREs is hard

    • Lack of consistency in terms used (SDE, TRE etc,). Variety of names confusing and needs to be resolved

    • 5 Safes useful as conceptual basis

    • Benefits of data use key

    • Don’t assume prior knowledge

  • Part 2: workshops

    • 7? workshops, 6 participants each, tried to provide a good demographic mix (age, ethnicity, gender, digital exclusion)

    • People care about: Is the data identifiable? Who has access? Reassurance that the data is safe. What the data is being used for, and for what purpose/benefit.

    • Some consensus in preferences over the use of certain terms/language.

  • Part 3: Explainer materials/draft resource: different tiered ‘levels’ of information for different levels of interest

    • 2x workshops

    • Interviews with domain expertise to fact-check

    • 1st level: Concise description of TRE/SDEs

    • 2nd level: Animation being prepared w/story board and voiceover

    • 3rd level: more detailed info on specific terms (e.g. 5 Safes)

Discussion#

  • How might you use this information/resource?

    • Honest broker service in NI, will flag this report with team who are leading on some work on public transparency (funding from UKRI). Liked the way the materials are adaptable for own use

    • Works in HDR Global, lower and middle income countries, lots of interest in TREs there. Work could be useful across these different regions, approach could be taken and tested across different regions.

    • RDS released TRE explainer, will tweak to reflect some of the findings from this work (over use of term ‘de-identified’).

  • Concerns about methodology, findings or resources that would limit you adopting them?

  • What do you think about the balance between transparency and accessibility?

  • What other topics related to TREs would benefit from PPIE?

Summary#

Presentation then discussion with positive feedback. There will be an animation that can be voiced over by different TREs with their specifics, accents…

Concerns about resources: trying to make something for everyone but there will always be gaps