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“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”
— Dr. Martin Luther King, Jr.
There is a crisis of trust in healthcare in the Black community. From the brutal days of slavery, when Black people were constantly exploited, to the U.S. Public Health Service Syphilis Study at Tuskegee, where Black men were left to suffer and die untreated, and Henrietta Lacks, whose cell line gave birth to countless advances in the treatment of disease without her knowledge, consent or any compensation to her or her descendants, the medical establishment has betrayed Black people. Today, we see that maternal mortality for Black women is three times higher than that of white women, Black newborns are more likely to die if not treated by Black doctors and COVID-19 is more likely to kill Black, Hispanic and Native American people.
These are the hard realities of the Black patient experience in healthcare.
When Black patients don’t feel safe, respected, valued or heard, they are less likely to seek medical treatment and more likely to suffer from treatable diseases. Moreover, more than 90% of patients that participate in clinical trials are of European ancestry, but in order for medicines to work for everyone, we need more diverse representation. Our team at Genentech — a biotech company focused on tackling some of the world's most serious diseases — wanted a better understanding of why patients of color were not participating in clinical trials and discontinuing healthcare services, so we went directly to the patient.
We developed a study that elevates the patient voice by asking them how they experience health inequity in their daily lives, and how that inequity impacts their relationship with the healthcare system. We probed into the healthcare engagement and experiences of 1,200 medically disenfranchised patients, as well as 1,000 patients that represent the U.S. general population for comparison. Medically disenfranchised patients belong to historically marginalized communities that lack access to quality healthcare, and report having experienced unfair treatment based on factors including race, ethnicity, gender, sexual orientation, income and socioeconomic status. Of the 1,200 disenfranchised patients, 300 were Black, 300 were Latinx, 300 were LGBTQ+ and 300 were of low socioeconomic status.
Our study highlights what millions of Black people, and other medically disenfranchised groups, live every day. But what we learned is this isn't just an issue of access, it's a crisis of trust. Medically disenfranchised patients believe the system is rigged against them, and understandably so. In fact, less than half of medically disenfranchised patients have confidence that the healthcare sought will be considerate and empathetic, and fit their specific needs. I understand this dynamic first-hand. While I may be a biotech executive, I am first and foremost a Black woman. A Black patient. A Black mother. In fact, my family members and I will often go out of our way to be seen by a physician of color. I know that by doing so we will be cared for and understood.
Patients do not believe they all are treated fairly and equally, and medically disenfranchised patients are delaying and discontinuing routine care because they do not believe they are understood. Based on our study, 49% of the U.S. general population feels all patients are treated fairly and equally — medically disenfranchised patients don’t agree. Only 27% of Black patients surveyed believe that all patients are treated fairly. This contributes to a vicious cycle of underdiagnosis and undertreatment.
To combat this problem, Genentech is working to build trust by leading the industry forward in delivering scientific innovations that drive better outcomes for patients and communities, our employees and the healthcare system by advancing and boldly championing diversity, equity and inclusion. We are acting with urgency to make the healthcare system work for patients who need it most. We are committed to advancing inclusive research, partnering with communities to make quality healthcare more accessible and investing in a diverse STEM talent pipeline to ensure the next generation of doctors, scientists and researchers are diverse and representative of what the world looks like. But there is still so much more work to be done.
Clinical trial participation may not be something you or a loved one are eager to do, and understandably so. But in order for us to deepen our understanding of disease and develop more personalized treatments for people of all backgrounds, we must have more complete information and study a broader population, including Black patients. A great example of how we’re working to advance this at Genentech is our recent EMPACTA study of patients with COVID-19 pneumonia. We focused on enrolling minority patients often underrepresented in clinical trials, and by coming up with new ways to engage patients from diverse backgrounds, we were successful: about 85% of patients came from racial and ethnic groups underrepresented in clinical studies. We were encouraged by our ability to enroll so many diverse patients for this trial — which makes me optimistic for a future with more diverse clinical trials.
It is critical that our industry engage diverse representation in clinical trials — especially when it comes to illnesses that are more likely to impact minorities. That’s why it’s important that as we advance personalized healthcare for all patients, we create systems that are inclusive and equitable. As we continue to use artificial intelligence (AI) to rely on data for personalized healthcare and the use of technology continues to grow, the need for more representative data increases. AI will become increasingly important to diagnose patients, yet the current data that feeds into the models is not representative of diverse patient populations. We need to build trust and engage underrepresented populations in our healthcare system to inform and improve AI algorithms that will be making many of our future healthcare treatment decisions.
Another way to achieve health equity and hold the healthcare community accountable is to empower patients with the tools to advocate for themselves while under care of a medical professional. Taking steps like insisting on multiple professional opinions and getting written documentation of diagnosis, or even documentation of treatment refusal are important in the fight for equitable treatment, and holding healthcare professionals accountable.
As we work to advance better health outcomes for everyone, we must also foster belonging and support the wellbeing of the people we work with every day, and lead with empathy for those around us who are most affected by medical racism and health disparities.
The findings in our study and the reality of health disparity are not surprising. But it is important that we have the data to back it up. To address health care disparities, we must address issues of trust in the healthcare system. We need to build bridges to medically disenfranchised patients. We must give them reasons to believe in the healthcare system.
We must speak up, stand up and step up to end all forms of racial injustice. By doing so, we can work to advance health equity for everyone, including the Black community.
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Quita Highsmith is Vice President and Chief Diversity Officer at Genentech.
