Roche’s Genentech wanted to know more about the day-to-day healthcare experiences among Black, Latinx and other disadvantaged groups—and when it ran a benchmark survey, the news wasn't good.
"Medically disenfranchised" patients said they're not only less confident they'll be treated fairly. They also believe the healthcare system is rigged against them.
Genentech surveyed more than 2,200 patients—about half from the general population and the other half patients from four communities: Black, Latinx, LGBTQ+ and low socioeconomic status, defined as earning less than $35,000 per year.
Along with little expectation about fair and equal treatment, about half of the marginalized patients said they skipped appointments or stopped care out of fear they were not understood. Another one-third don’t participate in clinical trials, get vaccinated or even get routine testing for medical conditions because they don't trust the healthcare system.
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“I’ll be honest, I wasn’t surprised by the findings because my family is part of that medically disenfranchised patient group,” Genentech's Chief Diversity Officer Quita Highsmith said. “What we have to do is put these issues out on the table front and center, and we must work with patients to help them feel valued, respected and understood.”
Genentech’s strategy for doing includes starting at the beginning of the pharma process—clinical research—and determining how to include diverse communities in that work. The company set up an external advisory council to help create more inclusive practices. Genentech also visits communities of color in person to talk to patients and recruit for trials.
“How do we build trust in the community? One of the ways we think about it is what I call the three B’s for people of color communities—the bishop, the bar room and the barbershop. Where are people getting information?” Highsmith said. “You have to go to the places where they are.”
While Genentech’s survey did not ask about COVID-19, the pandemic has highlighted the existing inequalities in healthcare and should galvanize the industry to take action, she said.
“As a black woman in the biotech industry, I’m very concerned about how COVID-19 is amplifying health disparities in communities of color," she said. "We’ve known about that for many decades, and while it may be new to some, it really is an urgent issue we have to address so that we don’t leave communities of color behind."