Community forum
This is an open space to discuss health research topics, feedback on the Gateway functionality and comment on resources such as datasets. Everyone is welcome to join existing discussions or start a new topic.

Data Diversity Interest Group

Below is a starter for 10:

What we know:

  • NHS-D DM+D provides a unified Ethnicity coding for England
  • CTV3 provides detailed breakdown at multiple ethnicity groups
  • ONS (GSS) uses a standard vocabulary for Ethnicity categories
  • Gender - Male, Female, Indeterminate, Not Known
  • LSOA,

What we don’t know:

  • What code lists are used elsewhere? - research Cohorts
  • How is Gender coded?
  • How are research protocol inclusion/exclusion criteria are defined?
  • How do we control for confounding factors e.g. socio-economic factors etc which are unfortunately related to ethnicity, so that we do not inadvertently widen the disparity?

Where do we want to be?

  • Federated repository that holds ethnicity codings used in all four nations
  • Harmonised ethnicity codes mapped across datasets in all four nations
  • Use mapped ethnicity codes to minimise unintended harm

How do we get there?

  • Any Quick Wins?
1 Like

No quick wins from me I’m afraid. My PPI groups on various maternity projects complain that the ethnicity codes are not specific enough to be helpful to individuals or to tease out those who are at greatest risk. Is there a way of coding healthcare systems, and access to them, in country of birth?

Also, are there codes to account for the level of gender reassignment an individual may have experienced? Can we track the impact on physical and mental health of gender dysphoria with no treatment, vs puberty blockers, vs various types of surgery?