'But really, Equality, Diversity and Inclusion programmes are meaningless nonsense, aren’t they?'

Given that challenging equity, diversity and inclusion (EDI) is currently rife, both in the UK and beyond, it did not come as a surprise to me when I was asked at a conference recently whether EDI programmes are just “meaningless nonsense”. The so-called ‘DEI backlash’ often appears loudest in headlines originating from the USA, and argues that EDI work has gone “too far”.

However, EDI programmes are simultaneously being challenged for not going far enough, and this was the concern underlying the question asked. These challenges are not new, but they do highlight the importance of the substance behind an organisation’s commitment to EDI and the significance of being able to evidence meaningful change.

What do I mean by substance? 

By substance I mean embedding equity as a consideration within decision-making, systems and processes, using a robust evidence-based approach to identifying inequalities, and creating meaningful engagement with stakeholders to ensure that the voices so often unheard can be heard.  

To illustrate why this is important, I’ll focus on the role of evidence. Context-specific evidence not only helps identify inequalities, but it also verifies the rationale or proportionality of an intervention. Furthermore, it enables actions to be prioritised within a given context, and evaluation of their impact.  

In the absence of an evidence-based approach, EDI work easily becomes performative, reacting to the latest trend or awareness day. This was illustrated by the gender pay gap campaign, which called out organisations who were celebrating International Women’s Day while not being transparent about or proactively tackling their own gender pay gap. Similarly, the EHRC inquiry into racial harassment within the UK Higher Education (HE) sector revealed a stark disconnect between HE institutions’ confidence in their reporting systems and their student and staff experience of racial harassment.   

There are various ways of establishing an evidence base – such as embedding equality impact assessments within policy and process reviews; assessing diversity, culture and experience across various stakeholder groups over time; or using a Theory of Change approach to set out an initiative’s rationale and approach. The way EDI is systematically and meaningfully embedded is highly contextual and both the scope and methodology needs to be carefully considered. 

Embedding EDI within HDR UK 

Developing Health Data Research UK (HDR UK)’s approach to EDI meant reflecting on our varied roles – as an employer, as a research institute and as the UK’s national health data science institute within the wider UK and international health data science communities – and then tailoring our approach accordingly.  

In our role as a research institute, HDR UK is a small, young and distributed organisation. While we have an active staff team, most of those working to deliver HDR UK’s programmes and activities are not directly employed by us but work within HE institutions in all four corners of the UK.

This brings specific challenges given the experiences and diversity that exists among HDR UK’s community is harder for us to know. Drawing on an extensive EDI landscape review has been vital to understand how other distributed, membership or professional community organisations, within and beyond the health sector, establish processes that fit their context.  

Considering our role as the national institute for health data science, we know that lack of representation in health data, e.g. the failure to collect ethnicity data, creates knowledge gaps which can lead to healthcare inequalities and there is robust evidence that facilitating access to diverse and representative data enables better science.

We can use our position to provide evidence on how the inclusive use of health and diversity data can help tackle these knowledge gaps, and support the growing drive to develop inclusive research across the sector. Furthermore, through our convening role in bringing together UK and international partners across the health sector, local government, policy makers, funders and industry, we have opportunities to influence policy.  

Take for example the work of UK Health Data Research Alliance, a network of over 100 member organisations across health, research and innovation supported by HDR UK. This member-led network’s recent work on “Enhancing Diversity and Quality in Health Data” is a great example of providing thought leadership in this space. Nuance is required to ensure that demographic characteristics are not drawn on in an oversimplified way but rather informed by underlying contexts that drive inequalities between groups and by affirming the dignity of under-served communities.  

Inclusive use of health and diversity data, therefore, requires meaningful engagement and collaboration with communities throughout data generation and research processes, as reflected through the embedding of EDI principles within HDR UK’s Patient and Public Involvement and Engagement Strategy. Meanwhile, the HDR UK-led COALESCE study not only provided evidence to improve COVID-19 vaccine uptake across different groups but also acted as an exemplar for the use of health data analytics to address health inequalities, shaping health policy and strategy going forward.  

Is HDR UK’s EDI strategy meaningful? 

When I joined HDR UK last year, having worked within UK Higher (and Further) Education for over a decade, I was keen to develop an approach to EDI within the complex world of health data research that would create meaningful change. It has been a privilege working with colleagues across HDR UK over the last year to develop our new EDI strategy, ensuring that it reflects the complexities and opportunities outlined above. 

Determining what EDI means in our context – specifically the detail of how embedding EDI contributes to HDR UK’s mission to accelerate trustworthy data use to improve people’s lives – has been an inspiring challenge.  

Returning full circle to the original question; as an EDI professional, having confidence that an organisation’s approach to EDI is meaningful is crucial. I am confident the resulting EDI strategy details our approach to embedding EDI systematically across the institute. We recognise that to provide leadership as a national body, we must embed our commitment to EDI within our own systems, policies and processes. Ultimately, its meaningfulness will be determined by evidence of its implementation and impact. 

 Find out more about HDR UK’s EDI commitment on our website.