Our Data and Demographic Workstream Members Shape Inclusive 'About You' Survey

On Monday, October 27, members of the PPIEP Data and Demographic Workstream gathered to assist in planning how the Clinical Research Facility (CRF) will gather demographic information for its upcoming About You Survey. The meeting was part of an ongoing effort to make research more inclusive and representative. Members came together to discuss, question, and improve the suggested method of collecting data.

The meeting started with a "data walk," where everyone looked at the CRF's planned survey data to see what was clear, what was unclear, which questions were missing, and who might be missing from the dataset. The exercise pushed participants to look at the information from new angles as well as areas where clarity or inclusion could be enhanced. Their observations will assist make sure that the final questions accurately reflects the experiences of all research participants, especially those whose identities or origins are often not reflected.

After the data walk, the group worked together to construct the questions that would be in the About You Survey. Participants worked in small groups to look at how questions about the nine protected characteristics and socio-economic background were worded, following the advice of the National Institute for Health and Care Research (NIHR). After that, everyone was asked to add the questions they would personally include.

An extra online session was set up for those who couldn't make it in person so that everyone could have a chance to give their feedback. This method was meant to get a wide range of opinions while yet keeping the PPIEP's Data and Demographic Workstream work open to everyone.

All of the feedback from the sessions will now be reviewed and used to help design the About You Survey. The new version, which will have questions about protected characteristics and socio-economic status, will be tested with people who are taking part in CRF research and clinical trials. The process is an important step towards making sure that data collected in the CRF is fair, open, and accurately reflects the communities it serves.