Five things I learnt about inclusive patient involvement and policy development from the Race Equality Foundation

Cardiovascular disease is a disease of inequality. Too often, things like where you live, your income, your background, your ethnicity, and your gender determine your chance of developing – and dying from – cardiovascular conditions. With heart and circulatory diseases accounting for a quarter of deaths in the UK every year, these are large, persistent injustices.

These issues are entrenched, systemic and deepening, as is evident in the unequal impacts of the coronavirus pandemic, including the disproportionate impact on people with minority ethnic backgrounds.

At the British Heart Foundation (BHF), we know we have a role to play in tackling these inequalities. We also know that our best intentions aren’t enough when it comes to issues of systemic racism and structural inequality, and that we need to make a proactive effort to shift the dial and be open to new ways of doing things.

When evaluating our approach to policy development and patient engagement for our Untold Heartbreak project last summer, we realised that we needed to take steps to become more inclusive in how we engaged with patients and the public.

Involving people with diverse backgrounds is not just a ‘nice to have’, especially when it comes to policy development. We need to understand the experiences and perspectives of everyone with heart and circulatory conditions, or we risk unintentionally widening the health gap.

We know that we still have a lot to learn at the BHF, so we wanted to work with another organisation with expertise in inclusive patient involvement and policy development, to trial some new approaches. That’s where the Race Equality Foundation comes in.

In September 2021, I was fortunate to work with Tracey Bignall (Senior Policy and Practice Officer at the Race Equality Foundation) on a patient focus group about the impact of the coronavirus pandemic on people with heart and circulatory conditions. Tracey not only helped us to engage with a more representative focus group of participants, but also worked with us to interrogate some of our processes for the future.

There are five key lessons I’ll be taking into future patient involvement work at the BHF:

1. Ensure adverts and written materials are accessible. Tracey advised us on how we could make our adverts and pre-read materials more inclusive and accessible by avoiding jargon and focusing only on the key information. She also suggested we remove the need for an expression of interest form, which the BHF typically uses to shortlist participants, as this could be a barrier to participation for some people.
2. Engage with hyper-local community groups. The Race Equality Foundation recruit participants from hyper-local community groups. At the September focus group, we engaged with several participants from a hyperlocal group supporting older Asian people in one borough of London. This was an entirely new model of engagement for the BHF, but given the huge rise of hyperlocal neighbourhood groups during the coronavirus pandemic, it’s something I’m keen to explore further.
3. Fairly compensate participants for their time and expertise. The Race Equality Foundation always provide focus group participants with a thank-you voucher, to recognise the value of their contribution – so that’s what we did for the September focus group. This is something I have now asked the BHF to consider implementing for all our patient involvement work.
4. Work with an interpreter. For some of the participants who joined us in September, English was a second or foreign language, so we worked with an interpreter to ensure we could all understand each other. This was a first for the BHF, and is something I’ll certainly be considering in the future, so language is not a barrier to engagement.
5. Engage on the go. Usually, we have participants join from their homes, but on this occasion some people spoke to us as they travelled to or from work or medical appointments. This worked well, as it allowed individuals to fit speaking with us into their day.

These five things will help the BHF lay the foundations for a more diverse and inclusive approach to patient involvement. This is just the start though, and it will be important for me – and the BHF – to continue to take proactive steps to dismantle racism and inequality in 2022 and beyond.