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Diversity in research and why it matters: Exploring Black maternal mortality rates

by Jennifer Gallant
|
June 19, 2024

As researchers, we aim to ensure products and services are designed with the user in mind. It would make sense, then, that diversity should be seamlessly interwoven into our processes so that we have a better chance at capturing all our users and identifying a broad range of problems in need of solving. Diversity is the practice or quality of including human beings with varying social and ethnic backgrounds, including but not limited to ability level, age, race, gender, political beliefs, religion, and educational background. We live in a naturally diverse world, so samples that we use for studies should represent that world. In reality, we often struggle to recruit and include a diverse sample, so we are building a puzzle with only some pieces. Unfortunately, healthcare is one such system where we see this all too often. Like many other products, systems, and spaces, the missing puzzle pieces belong to traditionally marginalized people.  

In last year’s post, we delved into the history of Juneteenth and how to celebrate as an ally. This year, we seek to shed light on the issues surrounding Black maternal health, provide some context to deeply rooted injustices, and provoke thoughts around our role as researchers in creating ripples in this tumultuous ocean of healthcare. 

Factors that affect Black maternal death rates in the US

Pregnancy-related deaths in the United States have become increasingly concerning since 2000, especially for Black women. According to an article by the Commonwealth Fund, when compared to 10 other developed nations (Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and the United Kingdom), the US maternal death rate is more than double that of other nations at 17.4 deaths per 100,000 births. Moreover, Black women in the US are three times as likely to die from pregnancy-related deaths than White women. The rub is that most of these deaths are preventable. What are these factors that can be changed to improve this outcome? 

The impact of midwives: The World Health Organization measures maternal deaths as deaths caused by pregnancy-related events while the mother is pregnant or within 42 days of the end of the pregnancy. They report this measure as a ratio per 100,000 births. Factors considered in the reduction of maternal deaths in other developed countries include efficient use of healthcare resources and better access to midwives (as opposed to only obstetrician-gynecologists), especially during the postpartum period. Nine of the ten developed countries (Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and the United Kingdom) have two to six times more midwives available per 1,000 births than the US. Midwives provide care that social determinants of health say are non-medical factors that influence overall health, like income, education, unemployment, access to transportation, and food insecurity. These are areas in which midwives can help support and provide community resources. In contrast, obstetrician-gynecologists typically focus solely on medical factors before, during, and after pregnancy and generally operate out of hospital or clinic-based settings. 

Acknowledging racial bias: Another barrier to consider in the US is racial bias. It can be easy to dismiss the presence of systemic racial bias, but with such a recent history of injustices, it is imperative to appreciate that, for many, the wounds are still raw. This is where UX researchers can have an impact. Facilitating research with empathy makes it possible to fully understand your user’s needs. When your team acquires the knowledge about how Black women and families have been historically treated in healthcare, it could lead to a proper understanding of the problem and result in better product and service design.

Each of these stories deserves attention, but we’ll introduce them at a high level for this blog. We hope you use the resources to explore.  

  • Tuskegee Experiment– this experiment involved 600 Black men with and without syphilis. While it was only supposed to last six months, it lasted 40 years- from 1932-1972. Researchers did not collect informed consent, and the men were given free medical exams, meals, and burial insurance as compensation. Participants with syphilis were not offered penicillin—even though it was the treatment of choice by 1943—because researchers wanted to study the long-term effects of untreated syphilis. Considering syphilis is a sexually transmitted disease that can be transferred from mother to child in the placenta, conducting such an unethical study has impacts across generations. 
  • Henrietta Lacks was a southern Black tobacco farmer born in 1920. She was diagnosed with cervical cancer in 1951 and went to Johns Hopkins seeking help. Before being treated, Henrietta Lacks had samples of her tumor removed without her consent and used for research purposes. Henrietta returned to the facility about a week later when another doctor took another sample that went on to be used to create the HeLa immortal cell line. The HeLa cell line was essential in discoveries/improvements, including the polio vaccine, in vitro fertilization, cloning, viruses, and radiation effects. According to the article The Immortal Life of Henrietta Lacks, it’s estimated that over 50 million metric tons worth of HeLa cells have been grown since Henrietta’s death. Henrietta’s family only just settled a lawsuit in 2023 with Thermo Fisher Scientific over claims of them profiting from the cancer cells that were taken from her without her consent.
  • History of gynecology– A man named James Marion Sims was considered the “father of modern gynecology,” having invented the vaginal speculum and making many other breakthroughs in the field of gynecology. However, he conducted many of his experiments on enslaved Black women without the use of anesthesia. He did this on the racist belief that Black people did not feel pain.
  • Relf vs. Weinberger– Poor women during the 1970s who were on welfare were subject to being involuntarily sterilized. Sisters Mary Alice Relf and Minnie Lee Relf were 12 and 14, respectively, in 1973 when they were sterilized without their or their parent’s/guardians’ consent. The Southern Poverty Law Center learned about this and later filed a lawsuit, discovering approximately 100,000-150,000 poor people were sterilized annually under federally funded programs. Many of the sterilizations took place without proper informed consent or via outright threats of welfare benefits being terminated. 

We’ve listed just a few examples of how deeply embedded racial bias is in the US healthcare system. It stands to reason that there is a gross mistrust of this system, which makes bridging gaps much more difficult. How can we continue to earn historically marginalized groups’ trust when researching to improve products and services?  

Informed consent: Obtaining informed consent from marginalized groups was historically neglected but can be a great place to ensure we’re doing our due diligence. Consents can be difficult to understand, often containing legalese that some do not understand easily. As researchers, we have a duty to ensure that our participants enter studies with full knowledge of what they are signing up for. Consent should be written in clear, understandable language, include any potential risks/benefits of participation, and specify how the participant’s data will be used, stored, and shared and for how long. Consenting to participate in research should be entirely voluntary, with no coercion as was present for women who would not consent to sterilization in the 1970s at the risk of losing their welfare benefits. Researchers should create space and opportunity for participants to ask clarifying questions. In addition, we should also explain that participants have the right to change their minds about participation in research at any time, without consequence.

Representation matters

There’s a strong argument to be made for racial concordance in all spaces. As humans, we have a natural inclination to gravitate towards those with whom we have shared experiences. In his article, Patrick Boyle, a senior staff writer for AAMCNews, explores the possible benefits of having more Black doctors and how it’s beneficial for all doctors to understand better what it means to treat Black patients. Boyle describes an assumption made by a dermatologist with an Asian background who was treating a Black patient. The doctor prescribed a medicated shampoo assuming it would be used daily. She did not know that some Black people with tighter hair textures wash their hair less frequently to avoid the damage of the shampoo stripping the oils from their hair, as was the case with this patient. The dermatologist could not have known about this cultural difference because she had no experience with it. Creating more room for diversity in medical spaces improves representation, and everyone benefits from the variety of knowledge, improving any doctor’s ability to treat a diverse patient population. The beauty of culture is in the nuances. There are so many shared experiences across cultures. Still, we can’t all know the nuance of someone else’s culture, and that’s where we all benefit from diversity because it makes us better providers, researchers, coworkers, friends- just overall better people. 

As UX researchers, what can we do? 

We recognize that the issue of Black maternal death is daunting as this is not something that developed overnight or even over several lifetimes; the solution is not simple and is undoubtedly multifaceted, so what can we do? UX researchers have a role to play in addressing this challenge. By arming ourselves with knowledge from diverse perspectives, we can appreciate the complexities of this issue.  

Actionable steps for UX researchers include:  

  • Continuously seek varied viewpoints to research with empathy. 
  • Ensure ethical practices through informed consent in research. This includes writing consent forms in plain, easy-to-understand language, offering opportunities for participants to ask clarifying questions, and explaining to participants the right to change their minds about participation in research at any time, without consequence. 
  • Support relevant organizations financially or by engagement.  
  • Explore new interests to broaden networks.  
  • Amplify the conversation by sharing resources and insights.  

Each step is a stride towards making a tangible difference in this critical area. 

 

Additional Resources