This article originally appeared in a Covid-19 Special Issue (July 2020).
The Public Health England (“PHE”) review into the disparities in risks and outcomes of COVID deaths was published on 3 June 2020. It was intended to address increasing concerns, notably voiced by the British Medical Association, about the disproportionate severity of infection and death rates from COVID-19 amongst Black, Asian and Minority Ethnic (“BAME”) communities. The first ten doctors in the UK to die from COVID-19 all came from BAME backgrounds.
The review controversially omitted any recommendations to address the increased risk faced by BAME communities. A second report containing feedback and recommendations from BAME stakeholders was subsequently published. It remains to be seen if the recommendations will be embraced, if they will reduce BAME deaths from COVID-19, or if, in the longer term, they will have any impact upon the deeply rooted health inequalities identified by the review.
What were the objectives of the review?
PHE’s press release published on 4 May 2020 indicated that the review was intended “to better understand how different factors such as ethnicity, deprivation, age, gender and obesity could impact on how people are affected by COVID-19.” Professor Kevin Fenton, the London Director of Public Health at PHE and NHS London was tasked with leading the review. He acknowledged that “increasing evidence and concern around the disproportionate impact of COVID-19 on black and minority ethnic groups highlights an important focus of this review. PHE is rapidly building robust data and undertaking detailed analysis to develop our understanding of the impact of this novel coronavirus on different groups which can inform actions to mitigate the risks it presents”. He added that PHE would be “engaging a wide range of external experts and independent advisors, representing diverse constituencies including devolved administrations, faith groups, voluntary and community sector organisations, local government, public health, academic, royal colleges and others. We are committed to hearing voices from a variety of perspectives on the impact of COVID-19 on people of different ethnicities.”
The official terms of reference of the review noted that the “emerging evidence from the United Kingdom and other countries” was that some groups, including some ethnic minorities, were at increased risk and that “this may exacerbate existing health inequalities.” The objectives of the review were then identified as follows, namely to:
- analyse and present disparities in COVID-19 infection, hospitalisation and mortality;
- describe the association between age and sex and COVID-19 cases and outcomes;
- quantify disparities in excess mortality by comparing against previous years;
- consider possible explanations for the findings such as the presence of obesity or underlying health conditions that are associated with increased risk of complications from COVID-19;
- determine the impact of occupation (including healthcare workers), where data are available, on hospital admissions and outcomes from COVID-19 infection;
- suggest recommendations for further action that should be taken to reduce disparities in risk and outcomes from COVID-19 on the population.
Accordingly, it was anticipated that recommendations would be made as to how to reduce any disparities that were identified, including those already noted to be emerging in relation to BAME communities. The terms of reference concluded: “PHE will work with external experts, independent advisors and stakeholders to consider the results of the review and any suggested recommendations”.
From the off, the review was beset with controversy as a result of the announcement that the former Chair of the Equality and Human Rights Commission, Trevor Phillips, was to be involved. Critics suggested that his selection, given his suspension from the Labour party for alleged Islamophobia, would undermine the credibility of the review, particularly when the first four doctors who were known to have died from COVID-19 were Muslim. An open letter signed by one hundred Black women “from the worlds of Media, Law, Criminal Justice, Health, Education and Publishing” called for him to be replaced, given his “recent history of discarding the very real issues and consequences of structural racism in the UK”. The letter called for “courageous leadership” for this “pivotal investigation” in order to make “tough calls about reducing health inequalities by dealing with the reality of racism and its impact on healthcare” as COVID-19 “is a gamechanger, a life-taker and an illustrator of how underlying structures such as racism shape disparities in a number of institutions, including healthcare and the NHS”. An open letter subsequently sent to PHE from tens of thousands of healthcare workers went further and recommended that the expert advice or support that Trevor Phillips was intended to provide to the review “must involve someone who has authoritative knowledge of medicine, epidemiology, culture and discrimination” and should be someone who has “the trust of the communities [the] review seeks to understand and ultimately benefit”.
PHE defended his involvement, but shortly before the publication of the review it emerged that Trevor Phillips had in fact played no role in the review. The role of Professor Fenton also appears to have been the subject of a quiet reversal, which was less welcome to campaigners. Professor Fenton is a Black epidemiologist whose appointment had been touted by the Equalities Minister Kemi Badenoch as an example of “diversity in leadership”. It was reported in the press that at an event at the Royal Society of Medicine held in May Professor Fenton confirmed that he had consulted at least 1,000 individuals as part of the review and that “The issues of racism, trust, discrimination and stigma are certainly coming up loud and clear from so many of our [community] stakeholders and partners”. However, upon publication of the report it appeared that the report was led and written by a Professor John Newton, with Professor Fenton only making a contribution to it. Moreover, PHE stated that the work that Professor Fenton had completed by engaging with individuals and organisations within the BAME community would be taken forward by Kemi Badenoch. It was not addressed within the review.
A missed opportunity
The review itself was met with widespread criticism not because of its objective findings, but because of what it did not contain. The review confirmed that BAME groups were more likely to die of COVID-19, but did not identify an action plan to address the disparity. There were accusations that the review had been censored and “whitewashed”, with none of the comments of the 1,000 BAME individuals and organisations with whom Professor Fenton had consulted included and none of the anticipated recommendations relating to race and ethnicity appearing in the final edit. Dr Chaand Nagpaul, BMA council chair, considered the review a missed opportunity and noted that it had failed to mention “the staggering higher proportion of BAME healthcare workers who have tragically died from COVID-19 – with more than 90 per cent of doctors being from BAME backgrounds. The report has also missed the opportunity for looking at occupational factors; the BMA was clear we needed to understand how job roles, exposure to the virus and availability of PPE [personal protective equipment] were risk factors.”
Perhaps unsurprisingly, the review concludes that the impact of COVID-19 has “replicated existing health inequalities and, in some cases, has increased them”. The review’s key findings can be summarised as follows:
- Age was identified as the biggest risk factor, with the greatest disparity in death rates being seen in older people. Among people already diagnosed with coronavirus, people who were 80 or older were seventy times more likely to die than those under 40.
- Working-age males diagnosed with COVID-19 were twice as likely to die as females. Men made up 46% of diagnosed cases but almost 60% of deaths and 70% of admissions to intensive care units. These disparities exist after taking ethnicity, deprivation and region into account, though not occupation.
- The risk of dying among those diagnosed with COVID-19 was found to be higher in BAME groups than in white ethnic groups. After accounting for the effect of sex, age, deprivation and region, people of Bangladeshi ethnicity were at most risk, with around twice the risk of death when compared to people of white British ethnicity. People of Chinese, Indian, Pakistani, other Asian, Caribbean and other Black ethnicity had between a 10% and 50% increased risk of death when compared to people of white British ethnicity. • When adjusted for age the highest diagnosis rates of COVID-19 were amongst people of Black ethnic groups (486 in females and 649 in males) and the lowest were in people of white ethnic groups (220 in females and 224 in males).
- All-cause mortality was almost four times higher than expected among Black males during the period reviewed, with mortality rates being almost three times higher in Asian males and almost two times higher in white males. Deaths were almost three times higher in this period in Black, mixed and other females and 2.4 times higher in Asian females compared with 1.6 times in white females. Notably, in previous years, all-cause mortality rates were lower in Asian and Black ethnic groups than in white ethnic groups, which means that mortality risk for COVID-19 is a reversal of what has been seen in the past. Again, the study did not include the effect of occupation which was identified as an important shortcoming due to the high proportion of workers in key occupations from BAME groups.
- The mortality rates from COVID-19 in the most deprived areas were found to be more than double the least deprived areas, for both males and females. This was greater than the inequality seen in mortality rates in previous years.
Black Lives Matter
Accordingly, it is clear that being BAME is a major risk factor for dying of COVID-19. That fact emerged against the background of global protests prompted by the killing of George Floyd during his arrest by US police officers. The relevance of this context was acknowledged by Matt Hancock, when updating Parliament on the key findings of the review. “Yes indeed, black lives matter but it is surely a call to action that black, Asian and minority ethnic people are more likely to die from Covid and more likely to be admitted to intensive care from Covid”.
Structural racism, not race
Commentators have been at pains to emphasise that that the research into higher death rates and rates of diagnosis amongst members of the BAME community discloses no clear evidence for a biological or genetic reason for the disparity. Rather, the issue is one of structural racism and inequality.
“the reality is there is no evidence that the genes used to divide people into races are linked to how our immune system responds to viral infections.
Indeed race is a social construct with no scientific basis. However, there are clear links between people’s racial groups, their socioeconomic status, what happens once they are infected, and the outcome of their infection. And focussing on the idea of a genetic link merely serves to distract from this.
In the absence of any genetic link between racial groups and susceptibility to the virus, we are left with the reality, which seems more difficult to accept that these groups are suffering more from how our societies are organised. There is no clear evidence that higher levels of conditions such as Type-2 diabetes, cardiovascular disease and weakened immune systems in disadvantaged communities are because of inherent genetic predispositions
But there is evidence they are the result of structural racism. All these underlying problems can be directly connected to the food and exercise you have access to, the level of education, employment, housing, healthcare economic and political power within these communities”.
In the context of occupational factors, a survey of 2,000 BAME NHS workers carried out by ITV News found that they believed deployment in high risk roles and race discrimination were major contributing factors to their colleagues dying at a rate seven times higher than their non BAME colleagues. Further, forty percent of BAME doctors surveyed by the BMA said risk assessments recommended by NHS England at the start of May had still not been carried out.
A call to action
The difficulty with Mr Hancock’s “call to action” was that the review did not come to any conclusions as to how the disproportionate adverse effect on BAME people might be addressed, in time to make an impact on deaths from COVID-19, or at all. In a chapter on “Limitations” the review expressed the caveat that the “descriptive nature of the analysis therefore limits the conclusions that can be drawn about the reasons for the disparities shown”. It is stated that that the relationship between ethnicity and health is “complex and likely to be the result of a combination of factors”:
“Firstly, people of BAME communities are likely to be at increased risk of acquiring the infection. This is because BAME people are more likely to live in urban areas, in overcrowded households, in deprived areas, and have jobs that expose them to higher risk. People of BAME groups are also more likely than people of White British ethnicity to be born abroad, which means they may face additional barriers in accessing services that are created by, for example, cultural and language differences.
Secondly, people of BAME communities are also likely to be at increased risk of poorer outcomes once they acquire the infection. For example, some co-morbidities which increase the risk of poorer outcomes from COVID-19 are more common among certain ethnic groups. People of Bangladeshi and Pakistani backgrounds have higher rates of cardiovascular disease than people from White British ethnicity, and people of Black Caribbean and Black African ethnicity have higher rates of hypertension compared with other ethnic groups (24). Data from the National Diabetes Audit suggests that type II diabetes prevalence is higher in people from BAME communities.”
Crucially, despite analysis of 10,841 COVID-19 cases in nurses, midwives and nursing associates indicating that those from Asian ethnic groups were overrepresented amongst those diagnosed with the virus, the analysis did not look at the possible reasons behind these differences and did not identify a clear causal link between occupation and risk of infection. Rather, the review simply stated that the overrepresentation:
“may be driven by factors like geography or the nature of individuals’ roles”, and it cautioned that a “more thorough analysis is required to fully understand the relationships between comorbidities including obesity, sociodemographic characteristics such as ethnicity and occupation and the risk of diagnosis and death to understand these disparities further”.
Earlier research by the Institute for Fiscal Studies had already found that occupational exposure may partially explain disproportionate deaths for some groups, with more than two in ten Black African women of working age employed in health and social care roles, Indian men 150% more likely to work in health or social care roles than their white British counterparts, a third of all working-age Black Africans employed in key worker roles (50% more than the share of the white British population) and Pakistani, Indian and Black African men being 90%, 150% and 310% respectively more likely to work in healthcare than white British men. The IFS research also found that many ethnic minorities are also more economically vulnerable to the current crisis than are white ethnic groups.
Against this background, the PHE review simply stated that the “results improve our understanding of the pandemic and will help in formulating the future public health response to it”. As noted above, this left commentators and those consulted disappointed that the review was conspicuously silent as to what that public health response should be and as to any recommendations for addressing existing health inequalities.
The second report
Following publication of the PHE review, an open letter to Matt Hancock and Kemi Badenoch from the BMA and thirty Black, Asian and minority ethnic medical organisations, representing tens of thousands of doctors and nurses, demanded urgent action to safeguard them from further deaths.
Material that was said to be an unpublished section of the PHE review was then leaked to the press, containing testimony received by Professor Fenton from approximately 4,000 stakeholders, including BAME groups and academics.
Although it was denied that there had been any censorship of the PHE review, a second report, Beyond the data: Understanding the impact of COVID-19 on BAME groups was subsequently published by PHE on 16 June 2020. It summarised the insights and feedback from more than 4,000 stakeholders, who provided comments and recommendations to Professor Fenton.
Some of the insights included in the second report are as follows:
- Stakeholders pointed to racism and discrimination experienced by communities and more specifically BAME key workers as a root cause to exposure risk and disease progression.
- Racism and discrimination experienced by BAME key workers was identified as a root cause affecting health and exposure risk. For BAME communities, lack of trust of NHS services resulted in reluctance to seek care.
- Historic racism and poorer experiences of healthcare or at work may mean that individuals in BAME groups are less likely to seek care when needed or as NHS staff are less likely to speak up when they have concerns about Personal Protective Equipment (PPE) or risk.
In a letter to Kemi Badenoch, the PHE Chief Executive, Duncan Selbie, acknowledged that the insights from BAME stakeholders made for “humbling reading” and contained a “clear message from stakeholders [as to] the requirement for tangible actions, provided at scale and pace, with a commitment to address the underlying factors of inequality.”
The second report contains seven recommendations to reduce inequality and to prevent the disparities in outcomes of COVID-19 for BAME communities:
- Mandate collection and recording of ethnicity data as part of routine NHS and social care data collection systems and from death certificates to inform actions to mitigate the impact of COVID-19 on BAME communities;
- Support community participatory research to understand the social, cultural, structural, economic, religious, and commercial determinants of COVID-19 in BAME communities, and to develop readily implementable and scalable programmes to reduce risk and improve health outcomes;
- Improve access, experiences and outcomes of NHS, local government and Integrated Care Systems commissioned services by BAME communities including: regular equity audits; use of Health Impact Assessments; integration of equality into quality systems; good representation of Black and minority ethnic communities among staff at all levels; sustained workforce development and employment practices; trust-building dialogue with service users;
- Accelerate the development of culturally competent occupational risk assessment tools that can be used to reduce the risk of an employee’s exposure to and acquisition of COVID-19, especially for key workers working with a large cross section of the general public or in contact with those infected with COVID-19;
- Fund, develop and implement culturally competent COVID-19 education and prevention campaigns, working in partnership with local BAME and faith communities to reinforce individual and household risk reduction strategies; rebuild trust with and uptake of routine clinical services; reinforce messages on early identification, testing and diagnosis; and prepare communities to take full advantage of interventions including contact tracing, antibody testing and ultimately vaccine availability;
- Accelerate efforts to target culturally competent health promotion and disease prevention programmes for non-communicable diseases promoting healthy weight, physical activity, smoking cessation, mental wellbeing and effective management of chronic conditions including diabetes, hypertension and asthma;
- Ensure that COVID-19 recovery strategies actively reduce inequalities caused by the wider determinants of health to create long term sustainable change. Fully funded, sustained and meaningful approaches to tackling ethnic inequalities must be prioritised.
The recommendations are clear, but whether those recommendations do in fact lead to “tangible actions” that have any measurable impact upon COVID-19 deaths or deep-rooted health inequalities remains to be seen.
There also remains the question of legal redress for those affected, particularly those who have died. Specific issues such as the provision of PPE in a specific healthcare context might be considered in the context of individual inquests into BAME deaths and civil actions could follow. There have been calls for a public inquiry into the issue and it is understood that at least one legal challenge has been initiated. The Equality and Human Rights Commission has already launched its own inquiry.
The Prime Minister has very recently committed to an independent inquiry into the coronavirus pandemic. However it is not clear when such an inquiry will take place, what its scope will be, and whether it will be a public inquiry under the Inquiries Act 2005. Disproportionate BAME deaths and the adequacy of efforts to combat health inequalities before the pandemic could – and we would argue should – form part of that.
For now, the PHE review and second report have identified and acknowledged that health inequality and structural racism increased the risk of death to BAME individuals from COVID-19. In many cases those who died were the very people who were being relied upon to protect everyone else from the disease, by working as key workers, nurses and doctors.