Diversity in data is a cross-cutting theme which aligns with HDR UK’s diversity and inclusion policy. The Alliance has highlighted the need to address concerns around quality of data and missing samples that can hinder the reliability of scientific insights. We are now keen to bring communities together to discuss recommendations for improving completeness, consistency and representativeness of routinely collected data.

While there are many different aspects to consider within the diversity data field, this working group focuses on challenges and opportunities in the use of data reporting ethnicity. 

Ethnicity coding working group

We recently hosted the fourth Diversity in Data – Ethnicity coding standards working group meeting in-person, at the College Court Conference Centre in Leicester.

The aim of this session was to discuss and refine a set of recommendations for key areas of improvement around recording of ethnicity data, developed based on feedback from previous sessions.

Draft recommendations can be viewed here

We had a fantastic line-up of expert speakers who shared their insights and perspectives on 6 key themes:

  1. The purpose and value of capturing ethnicity
    data and other determinants of health – Marta Pineda Moncusí (Oxford University)
  2. Ethnicity data standardisation – Vahé Nafilyan and Rose Drummond (Office for National Statistics)
  3. Communication and transparency around
    collection of personal data –  (Jo Palmer, Joseph Alderman,
    Elinor Laws STANDING Together)
  4. The need for training and guidance for data
    collection – Jonathan Valabhji (NHS England)
  5. Data Linkage to improve data completeness – Angela Wood (University of Cambridge)
  6. International harmonisation – Alastair Denniston (INSIGHT and University Hospitals Birmingham NHSFT)

Each presentation was followed by small group discussions, which allowed stakeholders working in this area the opportunity to share their thoughts and feedback to help to shape and inform a final set of recommendations.

A meeting report highlighting main discussion points from this fourth meeting can be viewed here.