If there is anything good that has come out of this coronavirus pandemic, it is that it brought the health disparities in the Black, brown, and low-income communities to the forefront.
A spotlight is shining on our broken healthcare system. It has shown the absolute distrust so many people of color have for certain aspects of the medical community.
Earlier this year, Genentech released their health equity study examining the patient’s perspective of medically disenfranchised populations.
They looked at over 2,000 patients of which 1,000 were from the general population, 300 were Black, 300 were Hispanic, 300 LGBTQ+, and 300 low socioeconomic status (patients earning under $35,000).
The findings of this study are unsettling. It found there is a crisis of trust in the healthcare system. Some people were surprised, but some were not.
“What this did was allow us to validate for the rest of the public and our population, that this crisis is manifested in that these medically disenfranchised patients don’t believe that the system is setup to support them,” explains Quita Highsmith, Vice President and Chief Diversity Officer, Genentech.
“They actually believe that it’s rigged against them. They don’t believe that all of the patients are treated fairly and equally. The thing that is really concerning is that because they are medically disenfranchised, they may discontinue routine care, may skip appointments, will not participate in clinical trials, and will not get the vaccine [COIVID]. As we think about COVID, knowing we are all going to need to be vaccinated, with this population that doesn’t trust the system, that are not likely to get vaccinated. We have to do more to engage these patients so that they know that the products are going to be safe and effective for them.”
Some of this distrust is rooted in past medical atrocities that are well documented, The Tuskegee Experiment of 1932, Henrietta Lack whose cells were used without her permission, or even as far back as slavery when Dr. Sims, a gynecologist, experimented with slave women.
Even today, trust in the medical system is eroded because of some doctor’s dismissive attitude toward patients of color. Telling patients it’s all in their heads, or discounting their pain as not severe, or even questioning the patients’ sincerity, assuming they are just seeking drugs.
The findings in this study are so important in giving insight into the feelings of a large part of the population and will, hopefully, open the eyes of the medical community. “We don’t want any community left behind. And so, when patients don’t feel safe, they don’t feel respected, they don’t feel valued, then they are less likely to seek medical treatment,” states Highsmith.
There are a couple of things at play, this study identified the lack of access to quality medical care in these communities, but it also identified the lack of trust.
Building bridges to trust can start in hospitals in the communities of these patients instead of the Ivy League institutions.
And if you want to engage Black communities and get them invested in something, go to their neighborhood trusted spaces according to Highsmith. “I believe in the three ‘Bs’ in the Black community, the bishop, the barbershop, and the beauty salon. That’s where you can talk to people,” she insists.
Highsmith maintains that there must be out-of-the-box thinking to reach people in Black communities. “How do we think about engagement with non-traditional stakeholders. Where are people getting information? Where are people congregating and how do we get into those spaces? We [Genentech]have been working on advancing inclusive research since 2017 before it became the thing to do. For us, we have several approaches to advancing inclusive research. One is recruitment. Represented in the patient population so they participate in clinical studies. Because right now, the majority of clinical studies are filled with whites. Only about 5 – 15% of clinical trials have people who are Asian, Hispanic, Blacks, and Native Americans. So, how do we recruit more representative populations? Secondly, how do we think about advancing personalized healthcare? What I mean by this is the treatment algorithms that are out here today. Artificial Intelligence is being used by pharma companies and healthcare systems and these algorithms are producing treatment systems for patients.”
Throughout the years, pharma has conducted clinical trials for medical therapies and the majority of participates were whites. The hope was that more people of color would participate in trials, but, in many cases, nothing has changed.
Right now, the therapeutics produced because of these trials will be formulated for the genomic makeup of whites. It’s only when people of color participate in these trials that therapeutics for their genomic makeup will be developed.
“But here’s the rub. Back in 2016, when we first started looking at this issue, 81% of the GWAS, which is the genome-wide sequencing data. Some 81% of GWAS data, genomic data was white. Fast forward to 2020. Now, it’s 90% of the data. You would think it would be getting increasingly diverse. It’s not, it’s getting increasingly white. And so, when we think about that, what does that mean? That means the health algorithm is going to be spitting out a treatment for me.
Say I got breast cancer. But 90% of the data are for white women. So, when I come in with my breast cancer, it might be different. My genomic makeup might be different. My experiences might be different. My environment might be different. But yet, I’m going to get that algorithm [for whites].”
Because of trials and testing being done on whites is why it is absolutely critical that Black and brown people participate in clinical trials. Medical researchers need to know how treatments work in various populations.
“We really have to start thinking about how we are going towards personalized healthcare. We’ve got to get this message out to our people so that they are not fearful to participate [in clinical trials],” says Highsmith.