Pragmatic Clinical Trials Unit guidance on ethnicity data

Author Helen Mthiyane
Posted 2021.12.15

The INCLUDED study is funded by NIHR CTU support funding and led by Professor Sandra Eldridge at the Pragmatic Clinical Trials Unit. They are exploring the different ways ethnicity data is collected, utilised, reported and interpreted, the challenges involved and what improvements could be made so that more members of ethnic minorities consider taking part in healthcare research/trials.

They aim to develop guidance for researchers/trialists to improve the collection, utility, reporting and interpretation  of ethnicity data in UK clinical trials by;

  1. asking CTUs to complete a survey about how they collect and handle ethnicity data and asking trialists/researchers  from online methodological forums related to trial design, conduct and delivery their opinions and what sort of guidance they might be interested in,
  2. conducting focus groups with community members from different ethnic minority groups to explore how they feel about the collection of ethnicity data, the possible effects on inclusion in trials and what might be done to improve this,
  3. having a consensus meeting to develop guidance.

They are asking trialists and researchers to please share any relevant guidance known to you and/or what more guidance might be needed in this topic areas.

Please contact Sian Newton on s.newton@qmul.ac.uk with;

  • any knowledge and views you have about collecting ethnicity data
  • any challenges you may have faced in collecting such data
  • any relevant guidance that you know about and/or have used
  • any ideas about further  guidance you think might be useful