Health Inequality

Published by Dr Katie Stephens on November 15, 2021

How much do you know about how healthcare can vary depending on the patient’s ethnicity? Is this something you have experienced yourself or had a friend or family member experience? Health inequality is pervasive in medical systems around the world, resulting in worse outcomes and higher death rates for people of colour.

This article uses Rachel Cargle’s summary on Medical Racism¹ as a starting point to take a deeper look into different areas of healthcare where racial inequality has been found, first historically and then in the present day. It also examines a handful of relevant journal articles (referenced at the end), and explores their evidence for the existence and the extent of current health inequalities in particular.

Please note that while more formal and scholarly definitions of ‘health inequality’ exist, the term is used in this blog to mean ‘unequal treatment of individuals based on their race, in the healthcare system’. (Some people may prefer the term ‘health inequity’ based on this definition.)

What Health Inequality has there been in the past?

Here are just two examples of historical health inequality which have both been well-documented. The first is from the 1800s and is particularly significant given the doctor’s ongoing legacy in medicine now. The second is much more recent. Both undoubtedly show racist and inhumane treatment of Black people by medical professionals.

Anarcha and Sims

For any other doctors reading this, you may recall coming across a Sims speculum or a Sims procedure during a gynaecology rotation. Dr J Marion Sims (1813 – 1883) is considered by many to be the ‘father of gynaecology’ and something of a celebrated medical pioneer. He was responsible for inventing the first vaginal speculum as well as creating the procedure for repairing a vesicovaginal fistula – an abnormal connection between the bladder and vagina that can develop in childbirth, causing constant urine leakage.

However, the way in which he achieved these successes is often overlooked or not even mentioned at all. He ran an experimental slave hospital in his backyard using some 12 enslaved Black women as test patients to operate on without anaesthesia. We know just 3 of these women’s names: Anarcha, Betsey and Lucy. While some sources argue that the women consented to being operated on, this is just not possible given their status as enslaved and resultant inability to decline an operation. Further, the experimenting was only done on enslaved Black women. When Sims felt the operation was reliable enough to offer it to White women (a thought process which in itself highlights the inhumane nature of the treatment of these Black women), none were able to make it through the procedure due to pain². Anarcha in particular is known to have had 13 experimental surgeries without anesthesia over a period of four years.

Obstetrician and Gynaecologist Dr Veronica Pimentel has just in 2021 had the American College of Obstetricians and Gynecologists accept her proposal to dedicate two days to recognising the contributions of these women to medicine. She writes “This February 28 and March 1, I encourage you to take the time to learn about Anarcha, Betsey, Lucy, and the other Black women who shaped so much of what we know about our field. We need to understand how our history, beliefs, and practices affect the care of our patients and their outcome. Only by doing so can we close the maternal health gap.”³ (For more on the maternal health gap, see under ‘Maternity’ below.)

Tuskagee study

In 1932, the US Public Health Service funded a study of 400 Black men with syphilis. It recruited participants by promising treatment while actually having the opposite intention of deliberately withholding treatment in order to observe the effects of untreated syphilis over time. This is despite treatment being recommended and thought to be effective when the study started. In addition, it didn’t inform the men that they were being part of an experiment, only that they would have ‘free care’. It deliberately deceived participants by regularly giving them placebos and even by telling them that painful lumbar puncture procedures (done as a test to assess for spread of syphilis) were not tests but a form of treatment⁴.

In time, the researchers recognised that the most knowledge was to be gained by performing autopsies after these men had died. Knowing the men would not consent to this, they outlined ways to deceive them by planning for their deaths to take place in the hospital where the autopsy would happen, and by reassuring them that their doctor was from the government and therefore trustworthy⁴. They eventually started paying for their burials in exchange when it became hard to lure the ill men into the hospital otherwise.

Quite early on in the study, the researchers became aware of the damage that untreated syphilis was causing. They regularly published these findings in medical journals as early as 1936, commenting on how syphilis was increasing the risk of cardiovascular disease. The findings grew worse still – after ten years, they reported a death rate that was doubled in the syphilis group compared to the control group. Still, nothing was done to stop the study, despite regular publishing in medical press for decades.

In 1950, one of the research doctors wrote “We now know, where we could only surmise before, that we have contributed to their ailments and shortened their lives” – in other words, we are harming and killing these people. This was around the time that penicillin became a recognised effective treatment for syphilis (prior to this, medics had thought arsenic was an effective treatment). And yet the study continued for another twenty-two years after this.

The researchers even actively prevented the men from getting effective treatment that was available and offered elsewhere, eg from the US Army, from the Alabama Health Department and from local physicians⁴. The study was reviewed periodically and granted permission to continue, including by the Center for Disease Control (CDC) in 1969. Only when the national press picked up the story of the study in 1972, forty years after it began, was it looked into by a different government body and eventually halted.

The layers of deliberate deception and obstruction to treatment despite knowing the effect of harming and killing these men, done in the name of science and medicine, recently and for such an extended period, is truly horrifying.It is no wonder that there are so many people of colour who are suspicious of healthcare now and who have greater COVID-19 vaccination hesitancy.

Does Health Inequality Exist Now?

As Rachel Cargle summarises, “the entirety of the African American community has yet to exist in a country where we know we can walk into a medical facility and are 100% sure we’ll be cared for with dignity and respect”¹. While her quote specifically mentions the African American community, these health inequalities are very much also prevalent in the UK, as we will show in this next section. This is not an exhaustive list of all of the ways inequality pervades healthcare today, but addresses how it relates to outcomes specifically in regards to maternity, emergency care, end of life care and pain management.

Maternity

According to the most recent national report on maternal mortality in the UK, Black women are still around four times more likely to die in pregnancy and childbirth than White women^5,6,7. Sadly, this is not a new finding. The MBRRACE-UK report available when this article was first written (Dec 2020) showed a 4.35x higher rate for Black women compared to White women⁶. The updated report from March 2023 shows only a slight improvement to 3.7x⁵. Asian women continue to be about 1.8x more likely to die than white women^5,6.

A study was done in 2007 that looked into whether this difference was caused due to Black women being more likely to have certain complications, or due to their outcomes being poorer.It looked at the rates of 5 specific pregnancy complications occurring in Black and White women and also the mortality rates from these 5 complications in these two groups. The 5 complications were pre-eclampsia, eclampsia, placental abruption, placenta previa and postpartum haemorrhage; these account for a quarter of all pregnancy-related deaths. It analysed data from the US National Hospital Discharge Survey for women who died between 1988 to 1999.

The study found that the occurrence rate of the 5 pregnancy-related complications that it examined were actually very similar between Black and White women – there wasn’t a significant difference in how often women of either race experienced these complications⁷.In fact, excessive bleeding after delivery (postpartum haemorrhage) was more common in White women than Black women.

However, for all 5 conditions, including excessive bleeding after delivery, Black women were far more likely to die than White women. Depending on the condition, their rate of dying was between 2.5 times to 3.9 higher. This study showed that the higher mortality rates for Black women in pregnancy and childbirth can’t be explained away by Black women being more likely to have one of these complications, but worryingly was due to them being more likely to die when they happen⁸.

Emergency Care

Trauma surgeon Adil Haider has conducted multiple studies and research into inequalities in medical care received in the emergency department and developing programs to resolve this. His interest in this area was piqued following an incident when a Black high school student who had received a critical injury started refusing medical care⁹. The team were not aware at the time but this ended up being due to PTSD (post-traumatic stress disorder). He noticed a significant disparity when contrasted with another young White woman who had significant psychological support lined up for a lesser injury. Having previously thought race did not play a part in care received in the emergency department, he was then curious to find out more.

A 2008 study that he was involved with looked at survival rates for people who had sustained traumatic injuries, comparing both race (Black and Hispanic vs White) and medical insurance status (insured vs non-insured).The study was done using the American National Trauma Data Bank (2001 – 2005) and took into account things like the severity of the injury, how the injury happened (penetrating injuries were more common in uninsured Black patients so this was important to correct the data for), and the demographics of the individual. It analysed data from over 310,000 adults under the age of 65. The main findings relevant to this article were as follows¹⁰:

Patients who were uninsured had higher death rates than those who were insured.
The effect of insurance status on death rates was even greater than the effect of race.
However, even accounting for insurance status, patients who were Black or Hispanic still had higher death rates than White patients after trauma.
The highest mortality rates were in the uninsured Black patients (11.4) and uninsured Hispanic patients (11.3); compared to a benchmark mortality rate of 4.2 in insured White patients, or 7.9 in uninsured White patients.

Care after trauma is especially important when it comes to rehabilitation after a brain injury. This 2007 study of over 50,000 adults in the US National Trauma Data Bank showed that even accounting for insurance status and injury severity, patients who were Black and Hispanic were 15% less likely to be given this important rehabilitation than White patients¹¹.

End of life care

This journal article is a reference-rich speculative analysis exploring how skin colour and racial bias may affect end of life care for the patient, their family and the staff involved¹².

First, the staff: it points out how a majority of Black nursing home aides in multiple studies experienced racism from the nursing home residents. Moreover, there were also reports of racism from other sources – residents’ White family members, White supervisors and other staff, and even institutionally, with federal agencies denying overtime pay to home health care workers (these are disproportionally people of colour and women).

Next, the patient: a 2006 study was quoted showing that Black people at the end of their life were less likely to report pain when their doctor was also Black. In other words, a Black persons’ pain was likely managed better when the physician was also Black (for more on this see the next section).

Finally, family members: The article recounted a 2005 study which showed that in an institution where the majority of the staff members were White, family members of Black patients reported a lower quality of care than those of White patients.

It also proposed some suggestions of how to improve these issues, such as staff training, having a formal process for dealing with racially abusive patients, educating White staff members about areas of racial ignorance and defensiveness, and providing chaplains and social workers who can support those at the end of their lives working through their own experiences of racial obliviousness or abuse.

Pain Perception

This sobering recent study from 2015 looked at racial bias in White laypeople and junior medics (medical students and junior doctors)¹³. It assessed whether people believed incorrect differences between a Black and a White body (eg ‘do White people have larger brains than Black people?’) and also how they rated perceived pain of Black and White people. For the medics, it also looked at what pain relief they recommended.

The first part of the study assessed the views of 92 White laypeople. It found that almost three quarters of these believed that at least one of the 11 false statements may be true. On average, this group of people thought 22% of the false statements were true.It also found that as a whole, the people who held more of the false beliefs tended to rate a Black person’s pain as less severe than a White person’s pain in equivalent hypothetical scenarios. Those who had fewer false beliefs rated both Black and White people’s pain the same. In other words, many White laypeople showed a racial bias, and when they did, they thought Black people would feel less pain than White people.

The second part of the study looked at 418 junior medics – this was mainly first, second and third year American medical students, and also 28 residents (junior doctors).

While this group did not believe in as many of the false beliefs, it still believed in more than expected: half of the group thought that at least one of the false statements might be true and on average they thought 11% of the statements were true. And this wasn’t just limited to first year medical students – a quarter of the junior doctors thought that Black people’s skin is thicker than White people’s.

Again, there was a trend that the more false beliefs, or racial bias, a person held, the more likely they were to rate a Black person’s pain as less severe than a White person’s. Interestingly, those who had fewer false beliefs showed a preference the other way around and rated a Black person’s pain as more than a White person’s, rather than as equal.

This study also took things a step further and looked at what the junior medics would recommend for pain relief in these hypothetical examples. This time, those with fewer racial biases didn’t differentiate in treatment recommendations depending on skin colour. Those with more racial biases did; they under-treated Black patients compared to White patients.

Clearly this is concerning as it demonstrated recent/current racial bias amongst junior medics that negatively affect treatment recommendations with under-treating the pain of Black people.

Our Commitments

In light of the above, at CheckUp Health, we have committed to the following principles:

Increasing Awareness of Health Inequality

One of the most sobering things for me when researching this article (in addition of course to learning the details of horrific acts that have happened in the name of medicine historically and some specifics of the unacceptable persistence of health inequality even now), was that none of this was covered in medical school or my own post-graduate education. Even after finishing all of my formal training, I have done countless mandatory ‘Equality and Diversity’ training modules and still these areas of health inequality have not been addressed.

Healthcare staff who are aware of inequalities that people of colour experience are better equipped to anticipate and therefore compensate for potential inadequacies in their treatment. They may be more likely to check that pain is well-managed, or that risks for poorer outcomes in maternity are assessed.

At CheckUp Health, we want to raise awareness of health inequality and in so doing, help healthcare professionals provide an equal standard of treatment to all of our patients.

Listening

We recognise that some of our patients may have had experiences of not feeling heard in the past as a result of health inequality. We promise to listen and take what they say seriously. Good communication is arguably the most essential component of a well-functioning doctor-patient relationship and is a top priority for us, and we pride ourselves on not only truly listening to their concerns, but ensuring that they come away from the encounter feeling well understood.

Treating you with the respect you deserve

We are not ‘colour blind’ at CheckUp Health. We acknowledge that each person’s ethnicity makes up part of who they are and has shaped what they have experienced (or not had to experience) in life and in healthcare settings. We promise to treat each individual with the respect that they deserve when they use our services.

CEO’s Statement

Fungai Ndemera, the founder and CEO of CheckUp Health has contributed a further personal statement regarding health inequality and CheckUp:

“We recognise that health inequities do not have a single cause and may be a result of subconscious bias of individuals, as well as larger structural and procedural dimensions that benefit some and marginalise others.

Checkup Health is committed to taking a concerted, collaborative effort, working with the NHS and stakeholders to tackle these determinants of health. Checkup Health is committed to improving trust of use of digital platforms to provide quality care. Through our option of blood pressure and blood sugar monitoring on our app, we aim to produce with consent, comprehensive, good-quality data which is essential for enabling policy-makers and health care professionals to identify the specific needs of different ethnic groups, respond with tailored strategies for addressing inequalities, and track the impact of these.”

References

https://mailchi.mp/a4798683e1bc/dothework-day-one-88749
Ojanuga D. The medical ethics of the ‘father of gynaecology’, Dr J Marion Sims. Journal of Medical Ethics Mar 1993, 19 (1) 28-31. https://jme.bmj.com/content/medethics/19/1/28.full.pdf
https://www.acog.org/news/news-articles/2021/02/recognizing-lucy-betsey-and-anarcha
Brandt, Allan M. 1978. “Racism and research: The case of the Tuskegee Syphilis study.” The Hastings Center Report 8(6): 21-29. http://nrs.harvard.edu/urn-3:HUL.InstRepos:3372911
https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/maternal-report-2022/MBRRACE-UK_Maternal_Report_2022_-_Lay_Summary_v10.pdf
https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/maternal-report-2020/MBRRACE-UK_Maternal_Report_Dec_2020_v10_ONLINE_VERSION_1404.pdf
https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/maternal-report-2020/MBRRACE-UK_Maternal_Report_2020_-_Lay_Summary_v10.pdf
Tucker MJ, Berg CJ, Callaghan WM, Hsia J. The Black-White disparity in pregnancy-related mortality from 5 conditions: differences in prevalence and case-fatality rates. Am J Public Health. 2007;97(2):247-251. doi:10.2105/AJPH.2005.072975. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781382/
https://www.vice.com/en/article/paq3z9/race-isnt-supposed-to-matter-in-the-er-but-it-does/
Haider AH, Chang DC, Efron DT, Haut ER, Crandall M, Cornwell EE 3rd. Race and insurance status as risk factors for trauma mortality. Arch Surg. 2008 Oct;143(10):945-9. doi: 10.1001/archsurg.143.10.945. PMID: 18936372. https://pubmed.ncbi.nlm.nih.gov/18936372/
Shafi S, de la Plata CM, Diaz-Arrastia R, Bransky A, Frankel H, Elliott AC, Parks J, Gentilello LM. Ethnic disparities exist in trauma care. J Trauma. 2007 Nov;63(5):1138-42. doi: 10.1097/TA.0b013e3181568cd4. PMID: 17993963. https://pubmed.ncbi.nlm.nih.gov/17993963/
Rosenblatt PC. Racism and Black-White Relationships in End-of-Life Care in the United States: A Speculative Analysis. Illness, Crisis & Loss. 2009;17(2):113-124. doi:10.2190/IL.17.2.c https://journals.sagepub.com/doi/abs/10.2190/IL.17.2.c?journalCode=icla&
Kelly M. Hoffman, Sophie Trawalter, Jordan R. Axt, M. Norman Oliver. Racial bias in pain assessment. Proceedings of the National Academy of Sciences Apr 2016, 113 (16) 4296-4301; DOI: 10.1073/pnas.1516047113 https://www.pnas.org/content/113/16/4296.full?utm_source=TrendMD&utm_medium=cpc&utm_campaign=Proc_Natl_Acad_Sci_U_S_A_TrendMD_0

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