OPINION: We can't fix what we don't measure

“We can’t fix what we don’t measure”

That was our starting point for the Bristol Protected Characteristics project, a regional effort to understand who is, and is not, taking part in health research across Bristol, North Somerset and South Gloucestershire (BNSSG).

What we already know

We have known about inequalities in health and care outcomes for decades, with people from ethnically minoritised backgrounds and those living in more deprived areas experiencing poorer health.

Yet these same groups are often the most under-represented in health research.

This means that some evidence-based treatments and interventions may not be appropriate or effective for these patient groups, because they weren’t included in the research sample that informed that treatment or intervention in the first place.

In short, those most in need are missing out.

What we did

While there is some evidence for this research participation gap, previously there was no comprehensive data to back it up. We wanted to come up with a way to get this data.

Working with members of the public, we co-designed a questionnaire to collect information on the protected characteristics of research participants (age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation). This questionnaire also collected participants’ caring responsibilities and used their postcodes to measure deprivation.

Using secure digital tools (REDCap, Twilio and DrDoctor), we sent this questionnaire to almost 40,000 people across the region who had taken part in a health research study between 1 January 2022 and 31 December 2023. More than 14,600 people responded.

What we found

Here are some of the things we found which we think are striking.  

• Ethnic diversity gap: 95% of respondents identified as White, compared to 87.3% in the BNSSG population. There was a significant under-representation from Black African, Black Caribbean and Asian heritage communities.
• Socioeconomic disparity: Generally, there were more research participants from the least deprived areas compared to the most deprived areas.
• Gender differences: There were many more females who took part in research studies than males.

Because of what we knew anecdotally, these findings weren’t surprising. But they are hugely significant because, for the first time, we now have baseline data about research participation collected across a whole region. Having this data means we can now measure if changes we make in the ways we approach and recruit research participants in the future lead to changes in research participation.

So what?

We know that evidence-based health and care delivery improves health outcomes. And if healthcare is to be fully equitable, all research must reflect the people we serve.

Systematic collection of demographic data allows us to:

• identify under-represented groups
• target inclusion efforts
• track our progress against inclusion goals.

What next?

We have worked with members of the public to develop local Key Performance Indicators (KPIs) to monitor inclusion in research. These are already helping to shape future recruitment and engagement strategies across the region.

We are also sharing our questionnaire – called the Bristol Protected Characteristics questionnaire – with different organisations and research teams, so it can become part of the standard study recruitment process.

We’d like to encourage anyone recruiting for a study to use the Bristol Protected Characteristics questionnaire when you recruit, to help understand the diversity of your participants. You can download it for free from the University of Bristol website.

And finally…

Under-represented communities have historically been labelled as ‘hard to reach’. The reality is very different.

They do want to take part in research. But in doing so, they also want to be treated with respect, to feel included in the process and to be kept informed about the benefits that result from the research that they take part in.

This shouldn’t feel like too much to ask.