Glossary working group scoping#

Lead: Rob Baxter (DARE UK)

Proposal#

Summary#

Glossary (noun); an alphabetical list of words relating to a specific subject, text, or dialect, with explanations; a brief dictionary.

There’s been anecdotal interest in a shared glossary across the TRE space. There are also plenty of existing ones out there. At risk of turning into an XKCD cartoon, the suggestion is to bring a number of them together, merging and reconciling as appropriate, and hosting at uktre.org. Questions we should ponder:

  • Which ones?

  • How to we manage change?

  • How do we reconcile conflicts?

Required preparation#

Over here is a first pass, bringing together two glossaries from DataMind and the DARE UK Driver Project Programme 2023. Take a look if you’ve time.

Couple of remarks: each was quite extensive, and the overlap between them was only around 2%; each has “project-” or “technology-specific” terms – should we drop terms like this?

Target audience#

Anyone who’s interested in harmonising the terms we use across the community space.

Session#

Summary#

The discussion focused on the creation of a unified glossary for the Trusted Research Environment (TRE) community to ensure a common understanding of terms across various projects and entities. Given the existence of (as far as we know) two glossaries with surprisingly little overlap (only 2% of entries were defined in both glossaries - one of those was the term ‘TRE’) there is a proposal to consolidate these resources, merging and reconciling terms where necessary and hosting the unified glossary on a dedicated platform like GitHub.

Why do this? It was agreed that a shared lexicon is crucial for achieving interoperability and federation among TREs (technical/operational alignment), as well as for ensuring a shared understanding of terminology that can support provenance and compliance efforts/governance and security requirements set by data controllers.

Challenges discussed include how to manage changes to the glossary over time, resolve conflicts between differing terminologies, and ensure the glossary remains aligned with related (and sometimes changing) legal and regulatory frameworks. The importance of considering public understanding and perception of these terms was also considered, with a suggestion that the glossary should be accessible and comprehensible to a wider audience beyond just the immediate TRE community. There is a need for a balance between formal definitions to support service federation and interoperability, and a more casual vocabulary that remains transparent and understandable to the public. The consensus leant towards initiating this project by putting forward a preliminary version of the glossary for community feedback, with an understanding that the glossary’s development and refinement will be an ongoing process.

Next steps#

  • Set something up in UK TRE GitHub

  • Focus as a goal on “formal” definitions for federation of services/interoperability

Raw notes#

  • There’s been anecdotal interest in a shared glossary across the TRE space. There are also plenty of existing ones out there. At risk of turning into an XKCD cartoon, the suggestion is to bring a number of them together, merging and reconciling as appropriate, and hosting at uktre.org. Questions we should ponder

    • Which ones?

    • How to we manage change?

    • How do we reconcile conflicts?

  • Here’s a starter for 10 at GoogleDocs

    • Yellow highlights are terms which are probably project-specific/don’t belong in the general glossary

    • Green highlighted terms are in both glossaries

  • Is this worthwhile exercise? YES! We need a common understanding of terms

    • If we want interoperablity/federation, we need a common understanding of terms, coding, helps provenance.

    • Essential for governance, security that data controllers require

  • ‘Equivalence’ vs. ‘standard’ - language doesn’t need to be the same to be equivalent (are we talking about the same concept even if we give it a different name)

    • Centralisation vs distributed/local, is there a central authority?

    • Legal definintions sacrosanct? Where there is one, no need to meddle.

  • Some challenges:

    • How do we reconcile conflicts?

    • How do we introduce change?

  • There are related groups, projects and activities we need to align with:

    1. UK GDPR!

    2. SATRE working group

    3. TRE/SDE terminology group

    4. NHS Passporting/Researcher Registry activities

    5. Record-keeping language in standards, eg, DEA 2017, DEA “2.0”

    6. W3C Community Data Privacy WG

    7. Understanding Patient Data

  • Can we learn from Understanding Patient Data work to align with public understanding of terminology?

    • Public understanding is a really important dimension - shouldn’t forget that this will be publically viewable

  • Aim to put up something for the community to throw rocks at?

    • Yes.

  • How formal does this need to be? What’s the driving use-case

    • Formal definitions for federation of services/interoperability?

      • initially, suggestion is to focus on this aspect

    • Casual, common vocabulary?

      • keep in mind the public-facing aspect of all this

Next steps#

  • Set something up in UK TRE GitHub

  • Focus as a goal on “formal” definitions for federation of services/interoperability