As Our Future Health’s chief medical officer, it’s always easy for me to talk about the number of people who have volunteered so far. We’re the UK’s largest health research programme, with over 1.5 million volunteers. More than one person joins every minute.

But size isn’t everything. The type of people who sign up is just as important. You could build a volunteer group of 10 million people, but if every person came from the same background, we’d only learn how to help that type of person. We wouldn’t see how diseases begin and progress in people from different backgrounds. And we wouldn’t succeed in our core mission to enable everyone to live longer, healthier lives.

This has been a problem in health research for a long time. In the past, some groups have lacked representation in health research programmes. This includes people from Black, Asian and minority ethnic communities. It also includes people with lower incomes.

Perhaps unsurprisingly, those under-represented groups are exactly the people who often suffer from worse health outcomes. The poorest people in our society have much lower life expectancy. And, for example, black men are more likely to develop prostate cancer and South Asians are at higher risk of  diabetes and heart disease. Currently, we don’t really know why.   

Our Future Health is committed to building a diverse group of volunteers, so we can answer those kinds of questions. We don’t just need 5 million people to volunteer. We need 5 million people who truly reflect the UK population.

How are we doing?

At every stage of Our Future Health so far, we’ve made plans to help under-represented groups take part. Our first clinics were all in regions where the populations are more diverse. We’re keeping clinics in those areas open for much longer, to maximise the opportunity for people from those communities to take part.

Since then, we’ve introduced a £10 voucher to help cover people’s costs of taking part. Our evidence shows that this voucher increases response rates among younger, ethnic minorities, and lower socio-economic groups. It helps to ensure no-one is excluded for financial reasons.

We’ve also targeted events where there are lots of people from ethnic minority groups. For example, we recently sent Ramadan-themed posters to mosques across the country.

The good news is that we’re seeing positive results.

Already, we have more people from lower socio-economic groups than any other health research programme in UK history. Roughly 10% of our volunteers come from the poorest bracket of society. We need to raise that number to truly reflect the UK population, but we’re hopeful it will increase  in the coming months as we open new clinics in areas which are more deprived.

Similarly, we can already say that Our Future Health is the most ethnically diverse large-scale UK research programme.

Around 20% of our cohort are from a non-British white ethnic minority. That’s much better than other large-scale programmes have achieved.

However, that 20% figure also reveals that our work is not done. Firstly, because we started in more diverse areas, we’re now moving on to recruit in less diverse areas. If we don’t take additional steps,  we can expect our headline figure to go down over the next few months.

And secondly, because 20% is an aggregate. It hides a more complex picture of ethnic diversity. For example, people from British Chinese background are very well represented in Our Future Health but we have been much less successful at recruiting participants from Bangladeshi, Pakistani and Black African backgrounds.

Closing the gap

I want to be clear here: we are certainly not giving up on our commitment to diversity. In fact, we’re increasing our efforts. We’re determined that Our Future Health is a health research programme that helps everyone.

That’s why we’re putting to the test at least five new approaches in 2024. Each is designed to help improve the diversity of our volunteer group – and we plan to expand on any that works in 2025.

Our five approaches are:

1. Identifying the needs of diverse communities in Manchester

At the end of 2023, we ran a pilot project with the British Muslim Heritage Centre, putting a mobile clinic in the centre’s car park and running joint communication activity with its leaders. While we did see an uplift in volunteer diversity, it wasn’t enough to make us think we could deliver the model at a bigger scale.

Since then, we’ve returned to the centre, to speak with – and learn from – people who saw our communications but decided not to join. We’ve taken some of those lessons and applied them to a second Manchester pilot project, on the Curry Mile. We’re now awaiting results and will share them shortly.

2. Engaging East London

One thing we learned from our partnership with the British Muslim Heritage Centre was that some people were cautious about joining because they had not heard of us until shortly before our clinic arrived. As a result, we are establishing a small community engagement team in East London to test whether we can have more impact by building relationships with communities over a longer period of time.

We’re starting this approach in East London because it has large Pakistani and Bangladeshi populations. If it works, we will develop more teams in other diverse areas.

3. Community champions

Many people are motivated by the idea of improving representation in health research. We plan to harness that enthusiasm by launching a ‘community champions’ programme. It will recruit and support a group of volunteers to spread the message about Our Future Health in their communities.

4. Community fund

People from under-represented groups have told us that they want to hear about Our Future Health from members of their community. It helps to build their trust in what we’re doing.

We are developing a scheme that provides grants to community organisations to help spread our message – and explain the need for representation.

5. Pop-up events

We want to make it as easy as possible for people to take part in our research programme. That’s why we’re testing ‘pop-up’ clinics at events, where people can sign up immediately, without having to book an appointment in the future.

We are developing the first example of this new approach for the Halal Expo 2024, which is being held in Manchester in August this year.

Where we’re headed

We know that our volunteer group may become less ethnically diverse over the next few months. It’s going to feel uncomfortable to see the numbers moving in the wrong direction in the short term. But we’re committed to a long-term approach, and that means doing small tests now that we can scale up next year.

By the time we’ve finished recruiting, I’m confident that we’ll have a volunteer group that reflects the whole of the UK. In the meanwhile, I’ll keep writing these updates and letting you know how we’re doing.

Please get in touch if you’d like to help us in our mission to enable everyone to live longer, healthier lives. You can email community@ourfuturehealth.org.uk