Why bias is key to stopping institutional and structural racism in healthcare and research
Systemic and institutional racism not only damages our health, it can kill, and it does
Let me get straight to the point. Systemic and institutional racism is affecting the lives of black and brown people right now, across the world in adverse ways. In the healthcare sector it not only damages our health, it can kill, and it does.
The need to address and have important, sometimes uncomfortable, conversations on how we can tackle systemic and institutional racism in healthcare has become a topical issue heightened by the murder of George Floyd at the hands of police. Recorded for all to see, his cries of: 'I can’t breathe!' reverberated around the world leading to the largest protests in history, and the global Black Lives Matter movement, which saw between 15 million and 26 million people worldwide protest inequalities.
In parallel, COVID-19 shone a spotlight on the inequity between black and brown people contracting and developing serious complications. The global chorus quickly turned into a resounding why? Why are black and brown people disproportionately impacted and disadvantaged? Why are they not being listened too?
The data gap is a product of an environment of discrimination
There is just not enough data from these communities to answer these whys. Unsurprisingly the data gap from those from marginalised communities has long been documented and serves as a barrier to readdressing these problems head on. But this lack of engagement has not come about in a vacuum, it is the direct product of an environment of discrimination that is insidious and has plagued the medical world for centuries.
Individual and collective biases shape how we engage, who we engage, and in what capacity we engage. It has shaped who sits on our leadership teams, who sets the agenda and who has access to funding. It has shaped our research world to such an extent that the current state by default only serves to maintain the status quo, with the real threat of making research, from all angles, the preserve of an exclusive demographic.
'Structural and institutional racism Is a system that can be seen across the world to the detriment of marginalised communities, who experience worse healthcare outcomes than the dominant race'
As far back as the early 1900s WEB Du Bois, an American sociologist, historian and civil rights leader was one of the first to note that health disparities in the black community compared to whites in the US were rooted in social conditions and not from inherent racial traits. He stated: 'The Negro death rate and sickness are largely matters of [social and economic] condition and not due to racial traits and tendencies.'
Martin Luther King declared health inequity the most shocking and inhumane form of injustice. Both men were acutely aware of how racism and discrimination create structural disadvantages that disproportionately marginalise black people, resulting in negative health outcomes.
This is because 'racism often leads to the development of negative attitudes (prejudice), and beliefs (stereotypes) toward non-dominant, stigmatised racial groups and differential treatment (discrimination) of these groups by both individuals and social institutions' (Williams and Mohammed 2013).
Effect of unconscious bias and institutional racism on health outcomes
Structural and institutional racism Is a system that can be seen across the world to the detriment of marginalised communities, who experience worse healthcare outcomes than the dominant race.
For example, in Institutional racism in Australian healthcare: a plea for decency Henry et al (2004) wrote: ‘There is no dispute that aboriginal health in Australia is both poor and very much worse than that of non-Aboriginal people, and their life expectancy at birth is about 21 years less for men and 19 years less for women. Among Aboriginal and Torres Strait Islander males, 6.8% die in infancy, compared to 1% for the rest of the population. For females the figures are 6.7% and 0.8%.’
When the global Black Lives Matter protests erupted it came as no surprise that Australians took to the streets, placards in hand, to protest the inequalities faced at home. Geia et al (2020) wrote: ‘It is apparent that many Australians are not sufficiently familiar with the truth about racism that is often hedged within colonised conversations manifested in various institutional entities, resulting in an unconscious bias that many people fail to recognise primarily as racism.’
A UK confidential enquiry into maternal deaths carried out by the MBRRACE-UK collaboration (Nuffield Department of Population Health 2021) uncovered that black women were four times more likely to die from pregnancy complications and were almost twice as likely to experience a stillbirth than white women.
Questions that nurse researchers must ask themselves
In a blog entitled Why Black women are Not Engaging in Research and What Can Be Done to Change This (Agyepong 2020) I posed key questions that any person involved in research should be asking themselves before embarking on a project. Fundamentally research can only be as good as the data used. If the data are not inclusive and representative we will never be able to grasp the bigger picture and get the full insight that is essential to evidence the need for change in the way that communities will benefit. Equally, if our research teams lack diversity, in particular diversity from the communities being researched, then how sure are we that we are even asking the right questions?
Institutional and structural racism in healthcare - ‘medical racism’ - begins in the privacy of our homes. It begins in the little conversations we overhear our parents speak when we are children, our interactions in the playground, in our schools and in our workplaces, which then seeps into the fibres that underpin our society. It begins with our perceptions of one another and it begins inside our hearts and minds.
The smog of our biases and prejudices grows into monolithic invisible structures that underpin our societies and create barriers to engagement. Our societal norms and structures are merely a mirror reflection of us.
Why lack of awareness of implicit bias matters
We all have biases. Biases in and of themselves are not a bad thing, they are fundamental to human nature. It is the lack of self-awareness about our own implicit biases which is at the heart of many of the problems marginalised communities experience today.
When these implicit biases morph into automatic stereotypes such as 'black women have a high pain threshold' or 'black women are too angry and loud', it leads us all down a toxic path. Singhal et al (2016) highlighted that black patients are half as likely to be prescribed pain medication in an emergency than white patients, while Hoffman et al (2016) found that half of white medical trainees believe myths such as 'black people’s nerve endings are less sensitive than white people’s', and 'black people’s blood coagulates more quickly than white people’s'.
'What are your thoughts on research conferences about diversity with few, if any, diverse speakers on the panel?'
The repercussions of these biases should not be taken lightly. As centuries of exploitation of black and brown bodies under the guise of medical research stemming from these biases catches up on us, the consequences of institutional distrust for the whole of society become more apparent.
Exploitation such as the Tuskegee experiment in the US which ran for decades until the 1970s, an unethical experiment studying syphilis on African-American men where the participants experienced severe health problems including blindness, mental impairment and even death (Paul and Brookes 2015). Or the unethical nutritional experiments performed on Canadian Aboriginal children at residential schools between 1942 and 1952 without consent from their parents resulting in malnutrition and death (Macdonald et al 2014). In Africa, unethical clinical trials have long been rolled out on the populace raising serious human rights concerns.
This has created a distrust in black and brown communities for medical institutions that is so deep and so prevalent that in what is arguably the biggest health crisis of our lifetime, the COVID-19 pandemic, black and brown people – disproportionately impacted by the pandemic – are now most hesitant to take the vaccine.
In the UK the NHS defines health inequalities as 'unfair and avoidable differences in health across the population, and between different groups within society'. It is important to read that definition again and pause when you reread the key word – avoidable.
How can we reduce unfair and avoidable health outcomes?
First, we need to look inwards. We need to look in the mirror and ask: What are the stereotypes and implicit biases I hold about particular groups in my society? When did I begin to hold these stereotypes and where did they come from? How do these stereotypes impact the way I think and interact with this group or community? How do these stereotypes affect my work?
In the research environment, have a look around and reflect on whether the senior management team represent, or has any representation, from the community in which it seeks to explore. If not, ask yourself am I comfortable with this? What are your thoughts on research conferences about diversity with few, if any, diverse speakers on the panel? Do you engage marginalised communities as victims for data mining or as leaders in their fields who are acutely aware of the problems faced and solutions needed? If the latter, how do you then amplify their voices and their work?
'The whole way we engage with marginalised communities, with our research and with our colleagues has to be relooked at, and the first place we must all start is with ourselves'
Second, and to reiterate again: we all have biases. Introspection cannot just be aimed at and undertaken by professionals from the dominant race, but by all. Many healthcare professionals are from marginalised communities. Being a recipient of subtle and overt racism over a lifetime can make someone internalise these false narratives as truths, and then unconsciously project these attitudes onto people who look exactly like themselves, or from other marginalised communities, thus maintaining the status quo. We are all vulnerable to messaging of hierarchy and race; the perception that it is only the dominant group that can uphold these structures is untrue.
Centuries of subjugation, discrimination, prejudice and marginalisation have left an impact. For some members of marginalised communities internalised racism, which involves the 'conscious and unconscious acceptance of racial hierarchy in which whites are constantly ranked above people of colour' (Johnson 2008), has to be unlearnt too.
Until we can all individually and collectively look inwards, health inequalities will not reduce and we will continue to repeat the self-perpetuating cycle of nominal engagement with those people whose insights are pivotal to rebalancing the current structures. The whole way we engage with marginalised communities, with our research and with our colleagues has to be relooked at, and the first place we must all start is with ourselves.
References
- Agyepong A (2020) Why Black women are Not Engaging in Research and What Can Be Done to Change This
- Geia A, Baird K, Bail K et al (2020) A unified call to action from Australian nursing and midwifery leaders: ensuring that Black lives matter. Contemporary Nurse. doi: 10.1080/10376178.2020.1809107
- Henry BR, Houston S, Mooney GH (2004) Institutional racism in Australian healthcare: a plea for decency. The Medical Journal of Australia. doi: 10.5694/j.1326-5377.2004.tb06056.x
- Hoffman KM, Trawalter S, Axt JR et al (2016) Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America. doi: 10.1073/pnas.1516047113
- Johnson R (2008) The psychology of racism: how internalized racism, academic self-concept, and campus racial climate impact the academic experiences and achievement of African American undergraduates. Thesis dissertation, University of California, Los Angeles
- MacDonald NE, Stanwick R, Lynk A (2014) Canada’s shameful history of nutrition research on residential school children: the need for strong medical ethics in Aboriginal health research. Paediatrics and Child Health. doi: 10.1093/pch/19.2.64
- Nuffield Department of Population Health (2021) MBRRACE-UK: Confidential Enquiry into Maternal Deaths
- Paul C, Brookes B (2015) The rationalization of unethical research: revisionist accounts of the Tuskegee Syphilis Study and the New Zealand “unfortunate experiment”. American Journal of Public Health. doi: 10.2105/AJPH.2015.302720
- Singhal A, Tien Y-Y, Hsia RY (2016) Racial-ethnic disparities in opioid prescriptions at emergency department visits for conditions commonly associated with prescription drug abuse. PLoS ONE. doi: 10.1371/journal.pone.0159224
- Williams DR, Mohammed SA (2013) Racism and health I: pathways and scientific evidence. American Behavioral Scientist. doi: 10.1177/0002764213487340
Agnes Agyepong, @agnes_agyepong, is head of engagement at Best Beginnings, @bestbeginnings, and Maternity Voices Partnership chair at Guy's and St Thomas' NHS Foundation Trust, @GSTTnhs