As the Race Equality Foundation, in partnership with the Joseph Rowntree Foundation, launch their survey on gaps in ethnicity data, our CEO, Jabeer Butt OBE, reflects on the importance of ethnicity-disaggregated data for understanding the impacts of racism on healthcare outcomes.
Amid the Covid-19 pandemic, I sat on a group that supported a regulator at the heart of protecting some of those most at risk from the spread of this disease. This regulator began publishing monthly updates drawn from their work, including the number of deaths of people in adult social care service. At a meeting I welcomed the sharing of information, but asked if there were plans for some of the data to be published disaggregated by ethnicity. It then emerged that the existing data collection tool did not allow for extraction of ethnicity-based data, so it was agreed that they would develop a new method for collecting this data.
Subsequently, the regulator did publish data on deaths in adult social care disaggregated by ethnicity, showing that deaths of suspected or confirmed Covid-19 were higher for people of Black backgrounds (54%) and Asian backgrounds (49%) in comparison to people of White backgrounds (44%).
Other contemporaneous analyses focusing on different population groups (such as people with a learning disability) or the general population showed some variations amongst Black, Asian and minoritised ethnic groups. However, these analyses always showed disproportionality in infection rates, and deaths from infection, for people from Black, Asian and minoritised ethnic communities in comparison to people of White backgrounds.
In securing more evidence of disproportionality, my hope was that the Race Equality Foundation’s and others’ repeated calls for specific and concerted action to better protect Black, Asian and minoritised ethnic communities would be heeded by national government, building on some of the work being taken forward in several urban centres. Unfortunately, this proved to be a futile hope. As has been widely documented and will likely be captured by the Covid-19 Inquiry, the Government at the time questioned what the drivers of this disproportionality were and repeatedly suggested it had nothing to do with these communities’ experience of racism. Perhaps the final demonstration of this failure to act was the priorities and distribution of the Covid-19 vaccine which took no account of ethnic disproportionality.
In microcosm, the experience of Covid-19 captures the challenges of addressing racial discrimination. Both the absence of data disaggregated by ethnicity and the poor quality of some of the data collected, which hampered the identification of the experiences of people from Black, Asian and minoritised ethnic backgrounds. However, even when we were able to secure better disaggregated data, we were faced with resistance -sometimes even denial- that racism is a driver and/or that specific action is needed.
Nevertheless, the Covid-19 experience also taught us that, without this data it will not be possible to make the arguments for action or to hold organisations accountable. Our hope is that the survey we are launching, as part of a wider project in partnership with the Joseph Rowntree Foundation, will push efforts to improve the quality of ethnicity-disaggregated data. At the same time, we aim to encourage greater accessibility and use of that data, to both understand experiences of people of Black, Asian and minoritised ethnic backgrounds, and to inform policy and practice that tackles systemic racism.
I encourage you to take part by sharing your experiences of, and the lessons you have learnt, collecting and/or working with ethnicity-disaggregated data through the survey.
Complete the survey here.
