Black History Month – actions not words

The histories and experiences of Black people need to be heard in our areas of work, so that we can change habits and practices which bolster structural inequities, knowingly or unknowingly. For us, of course, that area is health and social care research.

Broken trust

The new strategy for the HRA sets out to ‘make it easy to do research that people can trust’. Trust is fundamental to research: it affects who participates, who listens to the outcomes, and how those outcomes are acted upon.

Historic experiences of inequitable treatment have an impact on trust: whether that’s intentional, wholesale injustice such as the Tuskegee Syphilis Study; the question of why there is a four times higher maternal mortality rate amongst women from Black ethnic groups compared with White; finding that, in the UK, African-Caribbean men are up to 3 times more likely to develop prostate cancer than White men of the same age; or individual instances of having one’s health needs persistently doubted.

If we are to actively reshape unfair structures which benefit some and disadvantage others, then we need to name them, understand them, dismantle them, and create something new; new ways of listening, connecting and working. As our public contributors told us, ‘If you want things to be different, you have to do things differently.’

Time for Change: Action Not Words

Time for Change: Action Not Words is the theme for Black History Month 2022.

So, what are we doing to rebuild trust with Black communities and other often-ignored groups in the UK, to change the histories that future generations will learn about?

We are trying to lead by example as well as set the standards.

In leading by example:

• we are well underway with a programme of work to grow as an anti-racist organisation, changing policies, practices, development opportunities and organisational culture. We will make this work more visible to our partners and the public
• we have started exploring ways to improve the ethnic diversity of our Research Ethics Committees, recognising that African and Caribbean representation is particularly low
• we continue to amplify often-ignored voices through our community insight group and wider public involvement
• we plan to improve trust in in health and social care research through greater visibility of how research proposals are scrutinised before approval.

In setting the standards for research done by other others:

• we will be clearer with our expectations that research should be with and for everyone we will introduce more in-depth questions throughout the ethical review process to ensure these standards are met.
• we are leading a project to explore how to make people-centred clinical research happen more often
• we are working with stakeholders to help researchers earlier in the system, so that trust and inclusion are built into proposals from the initial spark of an idea through to the approval stage

What do we hope to see? We hope to see research that asks questions which are nuanced by equality and inclusion, informed by patients and the public. Research that includes diverse participation as an essential mark of quality, that is ethically reviewed by a diversity of minds and experiences. We want to see research that makes visible the value of involving often-ignored communities, that improves health inequalities and that is trusted by people who, historically, have had good reason to have misgivings.

Our role is to hold fast to our standards and make it as easy as possible to meet them.