For me personally, reflecting on the diversity of people in Health Data Research UK is bitter-sweet. When I think about the people who work for HDR UK, I am proud for example that the gender balance of our Committees and Boards is balanced, that our expert community of 400+ researchers and technologists are drawn from all four nations of the UK, and that we bring together people from across sectors to work towards common goals – such as the collaborations of industry, academia and the public/patients. I see my colleagues channelling our institutional values of transparency, optimism, respect, courage and humility every day in the decisions they make.
I am equally proud when I think of the HDR UK researchers who seek to ensure that every one of the c66million people in this country will benefit from the impacts of health data research – including marginalised groups, like those who are homeless as well as refugees. We have research underway that serves people possessing many of the protected characteristics enshrined by the Equality Act 2010 (and equivalent legislation in Northern Ireland), such as those with disabilities, pregnant women and older people.
We also have researchers working to ensure that the digital tools and methodologies our community develops for analysing health data, are free from ethnic bias. This ensures that any research using these tools benefits everyone, including those from the whole spectrum of ethnicities and races that make up the UK population.
But despite all of the above, the bitterness is that – on many other counts of diversity – there is so much more we aspire to do to fully embed inclusivity and diversity throughout HDR UK. For example, ethnic minorities and people with disabilities are woefully underrepresented throughout our community. Plus, there is now a huge body of evidence showing that people from Black, South Asian and minority ethnic groups in the UK are more likely to get COVID-19 and are at greater risk of worse outcomes – and this research has brought into sharp focus the significant barriers to conducting this kind of research, in part owing to the lack of consistent and systematic recording of ethnicity in much of the health data used in research, as well as other barriers relating to participation in research.
However, a progressive series of small changes made over the long term can evolve an organisation, and even whole sectors, to become the inclusive and diverse environment to which we aspire. This process can be helped along by some significant interventions to catalyse a shift in the culture and composition of our community. By reflecting and having critical conversations, we’ve already seen how it galvanises those around us such as the UK Health Data Research Alliance members. We are focussing on the tangible actions we can take to address our shortcomings in diversity and have established two immediate priorities:
1) Proactively championing a significant increase in diversity of datasets and show why this is important in achieving our mission – starting with those on the Health Data Research Innovation Gateway.
2) Putting in place interventions to enhance diversity and inclusion of people across the HDR UK community – in human resources, events, communications and engagement, including improving representation on our Boards and Committees. To enact our statement on anti-Black discrimination, we’re planning a major programme, to be launched in December.
Since publishing our Diversity and Inclusion Policy over the summer, we have instigated over 25 changes to policy and process within HDR UK. In our experience, we have learned you can’t leave inclusion and diversity to develop organically, with optimism alone, and that we need proactive inclusive and anti-racist processes to drive change, coupled with regular reflection and a commitment to seek out and meaningfully engage with experts and those with diverse lived experiences. It’s also an area in which people across the Institute need to be involved and committed to change. COVID-19 and the high-profile global acts of anti-Black discrimination this year, have changed us as an organisation. What we are setting out will not happen overnight, but we are embarking on sustained prioritisation of diversity and inclusion for HDR UK, to become the organisation we aspire to be, that is formed of, represented by and truly serves all communities across the UK.
If you have feedback or comments about the diversity of the people who make up our workforce and benefit from the impacts of our research, then our ears and minds are open – please contact Melissa Lewis-Brown (Science Manager), Sinduja Manohar (Public Engagement Manager) or send your thoughts anonymously through our online form.