Co-produced questionnaire gives insight into who’s taking part in health research

A Bristol Health Partners pilot project, funded by Bristol & Weston Hospitals Charity, NIHR Clinical Research Network West of England and now NHS England, is providing new insights into who takes part in health research.

Many reports and feedback from communities have shown that health research participants are not representative of the wider population in England. However, data about the characteristics of health research participants is not collected routinely. Without this information, it is hard to know the details of who is missing from health research and whether efforts to make research more inclusive are having an impact.

To address this gap, we co-produced a questionnaire with members of the public to collect data on research participants’ protected characteristics, as well as their caring responsibilities and postcodes (which provides a measure of deprivation). These factors can all influence whether people are involved in research.  It was successfully piloted with people who took part in NIHR Clinical Research Facility trials at University Hospitals Bristol and Weston NHS Foundation Trust (UHBW).

569 research participants who took part in trials between September 2021 and September 2023 were sent the questionnaire via email, text message or post. 68.7% responded by completing the questionnaire.

All data collected was anonymous so no respondents could be identified.

What the data showed

• The sample lacked ethnic diversity, 93.3% of respondents were from white backgrounds.
• 93% of respondents provided their postcode. Most of the people who responded lived in the least deprived areas.
• The age of the cohort showed a marked under-representation in those who were over 60 years old.
• 8% of respondents said they had a disability. Mental health-related disabilities were most cited.
• ‘No religion’ was the most chosen option by respondents (43.4%).
• Most respondents reported their sex to be female (53.2%).
• Most respondents reported being heterosexual (81.6%). Most were married or in a civil partnership (55.5%).
• Most respondents did not report any caring responsibilities (76.2%). Most did not report any pregnancies (95.9%) in the survey period.

While this sample was a small proportion of the people taking part in research locally, it shows how much more work is needed to make research more representative of the people it serves.

How the questionnaire was developed

A range of people – including those with disabilities and from ethnically minoritized, LGBTQIA+, and faith communities – took part in a series of focus groups to develop the questionnaire.

They provided guidance on every aspect of the questionnaire, including how to word and order questions to maximise the chances of people completing it.

The questionnaire was developed iteratively, with feedback actioned prior to the next focus group. The data received was stored securely and allowed swift reporting. These processes were designed so that they can be used in a range of settings.

Next steps

The questionnaire is now being piloted with a larger group of research participants at UHBW and will then be tested more widely across Bristol, North Somerset and South Gloucestershire.

It’s anticipated that this questionnaire could be rolled out nationally, to provide an effective way of collecting demographic data about who is taking part in health research and monitor whether this is changing.

It will complement work in the BNSSG Research Engagement Network and beyond to build trust between health and care organisations and people from diverse communities, to ensure that all communities benefit from involvement in research.

Project lead Professor David Wynick, Director of Bristol Health Partners Academic Health Science Centre, said:

“For the outcomes of health research to benefit everyone, it’s vital that people from all backgrounds and groups are encouraged to take part in that research. However, until now, we have not known enough about who is taking part. This is either because participants were not asked for this information at all, or the way they were asked made them reluctant to disclose it.

“We hope that this questionnaire – which has been developed with public involvement at every stage – will not only lead to routine collection of participant data in health research, but also to a concerted effort nationally to involve groups who aren’t represented currently.”

Connie Shiridzinomwa, Senior Project Manager at Bristol Health Partners, who managed the pilot and will be managing the wider roll-out, said:

“Co-developing this questionnaire was one of the best things I have done in my career. True co-production requires the ability to let go of your professional biases, listen, and respond. I am very proud of the questionnaire that we produced.”