The Covid-19 pandemic is impacting on different protected groups in different ways. It appears that the mortality rate for men is higher than it is for women, and that those from black and minority ethnic (BAME) backgrounds are over-represented amongst fatalities. Socio-economic impacts are being shouldered heavily by women for a number of reasons, including their dominance in the health and social care sector and the fact that the care gap is often filled by women when other forms of care are no longer available.
Policymakers need to respond to these phenomena in the immediate term, and construct responses that mitigate the differing impacts of Covid-19. In order to do so, they require high quality data that is disaggregated by sex, age, ethnicity, geography, economic status etc.
In the medium and longer term, medical researchers and social scientists will use the same datasets to establish what we can learn about the effects of this pandemic. Many will already be considering ways in which they can gather data now to inform their future work.
However, there is already growing concern about the loss of, or a failure to collect robust data that is disaggregated by sex. In her book Invisible Women, author Caroline Criado Perez forensically trawled the myriad of ways in which organisations of all types have failed to take account of women and women’s bodies, from clinical trials and safety tests to the design of PPE and transport policies. Women constitute 51% of the population, and a failure to take account of their experiences and needs is inexcusable.
A range of public authorities have either ceased collecting data on sex and/or conflated or replaced data on sex with data on gender identity. For instance, in 2018 the Scottish Household Survey – which surveys 11,000 Scottish citizens annually – replaced the sex question with a question on gender identity.
In the current pandemic, it has been disappointing to see a number of Covid-19 related surveys fail to seek robust data on sex. For example, an online survey looking at people’s experiences of the coronavirus conducted by NHS England asked for respondents’ age and postcode, but not their sex. A survey by the London School of Hygiene and Tropical Medicine considering how well people were coping with the pandemic and how information about the disease was being shared in communities listed five potential responses to the question ‘What is your gender?’.
Next year, the 2021 UK census will collect important baseline data about the UK population, and most likely capture the effects of the Covid-19 pandemic across a range of outcomes. Currently the Office for National Statistics, the National Records of Scotland and the Northern Ireland Research and Statistical Agency are proposing guidance to accompany the longstanding sex question which instructs respondents to answer based on their self-declared gender identity, thereby conflating two separate demographic characteristics. This is despite the fact that in England, Wales and Scotland, there will be a new, separate question on gender identity.
We are particularly concerned about the potential impact of this guidance on population sub-groups. There is no systematic evidence on the size and distribution of the trans population, which is unlikely to be distributed across the population, for example by age, sex and geography. This means that the effects on data reliability are likely to be greater at the sub-group level. For example, over the past decade, there have been huge increases in the number of young girls presenting with gender dysphoria at gender identity clinics.
When it comes to understanding the mortality rate for Covid-19, it is likely that health researchers will looks closely at a combination of demographic variables, e.g. sex, age, ethnicity, geography, as well as co-morbidities and other issues such as employment status. It is rare that researchers consider a single demographic variable to establish trends or incidence rates of health and other phenomena.
It is not at all clear that the census authorities have undertaken any work to establish the potential effects of the proposed guidance on different sub-groups, or the implications for the quality of analysis that will be possible using the data collected on sex.
We appreciate that the Committee will be focussed in the first instance on the immediate impacts of Covid-19 and the short-term public policy responses to the pandemic. We hope however, that it is possible to consider the importance of ensuring that any data collected in the coming months and years is of the highest quality, and can be reliably used to inform future policymaking and public expenditure.