The Oxford Health and Oxford Biomedical Research Centres (BRC) have developed a survey to better understand the demographic make-up of members of their various patient and public involvement and engagement (PPIE) groups.

The Tell Us About You survey was developed with vital input from the two BRCs’ Diversity in Research Group.

The aim of the survey – which is available for use across the BRCs’ PPIE groups – is to capture demographic information, such as age, gender, race etc, to get a clearer picture of exactly who is involved in research, how representative they are of the general population and which sections of society are under-represented.

“We want to ensure that everybody has the opportunity to get involved in research, whatever their background,” said Rachel Taylor, the Oxford BRC’s Public and Community Involvement, Engagement and Participation Lead. “This survey will help us to identify if there are any communities that we serve who are not getting involved in – and helping to influence – our research.

“Our Diversity in Research Group wanted to help with developing the survey because they pointed out that demographic survey questions often feel tokenistic and not inclusive.” 

The Diversity in Research Group has around 15 members, mainly from minority ethnic communities and other groups who are not usually involved with research, such as younger adults, carers and people from LGBT+ communities.

Among the improvements made by the group to the survey were:

• Making the wording more informal and consequently clearer.
• Putting the sexuality and ethnicity categories in alphabetical order, rather than having “heterosexual” and “white” first.
• Removing the word “highest” from the question “what is your highest level of education?”; and adding an option for overseas qualifications.
• Simplifying advice on how to get involved.

Using the data collected by the survey and the under-represented groups identified in the NIHR INCLUDE project, the Diversity in Research Group members are now identifying communities that are not represented in the group, such as asylum seekers and refugees, and people who are transgender.