In 1976, Gerald Ford became the first president to officially recognise Black History Month (BHM), stating that the month gave the American public the opportunity to “seize the opportunity to honour the too-often neglected accomplishments of Black Americans in every area of endeavour throughout our history.” Since then, every US president has provided their presidential proclamation for National African American History month.
But the origins of BHM in America date back further than 1976, with the introduction of a Black History Week by scholar and public educator Carter G. Woodson in 1926. The celebration of Black Americans’ contributions to American/global history is two years away from its centenary!
As clinical trials professionals, we might ask what relevance the American Black History Month has for us as practitioners, particularly in the 21st century, and if we’re working outside of the US.
BHM gives us the opportunity to learn about and reflect upon the history of Black people's global participation in medicine, research and clinical trials, and understand that history is pivotal if we are to create interventions and solutions that address the racial disparities in health care that persist to this day. For example, how could BHM help us understand why there is a lack of clinical trial uptake within the Black community? Although uptake within the Black community is a global issue, for the purpose of this blog we will be focusing on America.
Overview
(The following section contains content you may find disturbing)
From the 17th century into the 20th century, African American people were subject to a barrage of exploitation and discrimination from the US medical establishment and its practitioners, especially in the American South. Pre-civil war medical journals highlight the network of medical colleges and doctors that performed experiments on slaves that were published.
Physician Samuel A. Cartwright coined the term drapetomania, a disorder that caused slaves to run away from their slave masters. Planned Parenthood, the reproductive and sexual health non-profit was founded by Margaret Sanger, an advocate for women’s reproductive rights who was also an avowed eugenicist. The first forms of birth control were tested, without consent, upon Puerto Rican women, and Indigenous American peoples were routinely sterilised in the 1950s.
One of the most enduring examples of unethical research in American clinical trials history is the Tuskegee Syphilis Study. The study, conducted by the US Public Health Service, observed the natural progression of humans infected with untreated syphilis from 1932 to 1972. The study was conducted on poor African American sharecroppers. The men were promised free medical care; however, the 399 men with latent untreated syphilis were prescribed disguised placebos and denied access to penicillin and syphilis treatment programs available to residents of Macon County. The infamous study led to president Bill Clinton issuing an apology in 1997.
This is a disturbing history to contend with, but it’s a context we need to be aware of if we are to understand why there is mistrust amongst the Black community for clinical research uptake today in both the US and within a global context.
People of colour still receive different, and often poorer forms of treatment. Race-based guidelines have led to African American people receiving differential and often limited treatments for hypertension. African American people are more likely to be diagnosed with schizophrenia, overlooking other mood disorders, such as depression, leading to high rights of hospitalisation.
In one of our previous blogs on health disparities in clinical research, we highlighted a number of other ways people of colour face explicit and implicit forms of discrimination in healthcare settings. For example, there are higher mortality rates amongst pregnant Black women in childbirth. Black women were more likely to be diagnosed with breast cancer than white women, and Black men are more likely to be diagnosed with colorectal cancer than White men.
This means that ultimately, African American people are more likely to distrust their physicians than their White counterparts, which is compounded by other factors, such as regionality and socioeconomic positioning.
Despite the progress that has been made since the first recognised Black History Month in 1976, latent biases and beliefs about African American people still persist within American healthcare systems. These include the differential psychiatric treatment of African American people that dates back to the 19th century, the belief that African American people are separate to and need differential treatment from White people, and underserved areas of research that mean we can’t explain disparities in cancer diagnoses amongst Black people.
Beyond the mistrust between Black communities and healthcare systems, there are a number of other barriers that make clinical trial uptake amongst the community more difficult, which also have their roots in the longer history of how some Black communities have been underdeveloped and under-resourced.
Under-resourced hospitals, which are more likely to be in poorer African American communities, are less likely to run clinical trials, and/or lack the funding and infrastructure to ensure the trial’s success; for example, lacking the dedicated staff to enrol and monitor participants in clinical trials.
For successful enrollment, research institutions need to foster trust and connections within their local communities via outreach and engagement. However, as we saw from our previous section, building that trust can be difficult with both historical and contemporaneous factors causing distrust for medical institutions.
Healthcare providers may be hesitant to suggest clinical trials to ethnic minority patients, or they may just be unaware of regional and national clinical trials that are taking place. Researchers can still be subject to unconscious bias, and when this is coupled with socioeconomic factors – a lack of public transportation to the clinical trials site, the inability to take time off work or find childcare – we can see the barriers happening within and outside of the clinical research trials.
These statistics may show us the story of disparities in the US, but it is a similar story in the UK. There was lower uptake and clinical trials participation for the Covid-19 vaccination amongst Black African, Black Caribbean and Pakistani groups. Ethnic minorities are more likely to have lower levels of health literacy than White people in the UK, as well.
Therefore, we can see similarities between both the US and the UK when it comes to health disparities and participation in clinical trials. Geographic and regional factors, a lack of available clinical trials, health illiteracy and distrust amongst ethnic minority communities and healthcare providers is a common thread on both sides of the Atlantic.
As clinical trials professionals, it’s vital that we have a diversity of participants in our research. As the differential prescription of medicine for hypertension in the US demonstrates, a lack of diverse participants can lead us to make uninformed conclusions and recommendations for different populations of people.
Building diverse clinical trials requires us to be conscious and diligent when it comes to inclusion, diversity and barriers throughout every step of designing our clinical trials. As the founder and director of CGX Lia Hunter puts it:
“You cannot get Black people to do trials just by putting a Black person on a poster. It’s not going to work, it’s not going to make them feel included; quite the opposite. It is about making them understand the benefits for themselves to having health equality and what health equality really means.”
CGX’s mission is to train the next generation of clinical trials researchers to the highest quality so they can deliver the treatments and therapeutics we need. Part of this mission can only be achieved with personnel that are aware of the barriers and biases that affect ethnic minority uptake in clinical trials, as well as the historical legacies that have sown mistrust and apprehension amongst Black communities around the world.
With our consultancy service, Clinnovate, we can make sure that your clinical trials are designed to address the blind spots and barriers that prevent ethnic minority participation in your research. If you want to find out more, then contact us today.
Finally, to all of our readers, colleagues and partners in the US, we hope you have an inspiring Black History Month!
