DISTINCT: collecting data to monitor inclusivity of clinical research

What is the project about?

The DISTINCT project is looking for the best way to collect information about personal characteristics from study participants. Historically, we have not collected much information about peoples’ personal characteristics within research studies. This means it is hard to know if research is including people from all backgrounds. The DISTINCT project agreed a set of questions to ask study participants about their personal characteristics, to help us make our research more inclusive in future.

Who was involved in developing the question set?

We held discussion groups with patients and members of the public to agree the best set of questions to ask research participants. Most questions were selected from national surveys, to allow comparison with available datasets, and were modified following discussion group feedback. The final question set was agreed in September 2024 and includes 15 questions. It is now being tested in our research studies to check that it is acceptable to our participants.

DISTINCT pilot

The DISTINCT question set is available for use by UK non-commercial researchers who agree to give feedback on implementation of the question set, and aggregate data on response rates. These data will be used as part of a pilot to assess generalisability and acceptability and make further refinements to the question set in future. If you would like to take part in the pilot, or would like any more information, please email [email protected].

Who is organising the project?

DISTINCT is a joint project between the Clinical Trials and Statistics Unit and the Institute of Cancer Research (ICR-CTSU) and the Cancer Prevention Trials Unit (CPTU) at Queen Mary University of London (QMUL).

Project co-leads:
Rebecca Lewis, Clinical Trials Programme Manager and EDI Lead, ICR-CTSU
Emma Lidington, Behavioural Scientist and EDI Lead, CPTU, QMUL