Inequities in the healthcare system are deepening. A concurrent crisis of distrust is growing. And while patients and providers alike want change, solutions to both problems will require deep and fundamental disruption of the status quo.
Such were the major takeaways from a roundtable discussion of healthcare inequities at The 2021 Atlantic Festival, a seven-day, all-digital event convening prominent voices from politics, business, science, technology, and culture to explore ideas for building a better future.
Featuring healthcare experts and leaders from across the country, the discussion was underwritten by Genentech and touched on findings from the company’s 2021 Health Equity study.
A national online survey of 2,200 patients—more than half identifying as medically disenfranchised and as Black, Hispanic/Latinx, LGBTQ+, or of low socioeconomic status—as well as roughly 400 physicians, nurses, pharmacists, or physician assistants, the Genentech study found that:
“Our goal was to identify how and why some patients lack access to timely, relevant, and sustainable care,” said Genentech Chief Executive Officer Alexander Hardy. “The findings, no surprise, are sobering.”
The study’s results proved very relevant to the lively, 90-minute conversation that more deeply diagnosed the problems—and prescribed needed solutions rooted in education and communication:
"What if I had cancer?’ And the healthcare system is going to treat me, when I am at my lowest moment, like that … they just told me I didn’t matter.”
In December of 2020, Quita Highsmith was asked to participate in a COVID-19 clinical trial. At first, she was excited. As a Black woman and the chief diversity officer at Genentech, she knew that patients of color too often are underrepresented in research and otherwise marginalized by the healthcare system.
Then came a Zoom call with one of the study’s investigators. “This Hispanic man wanted to ask a question, and the investigator was so disrespectful and rude,” Highsmith said. A few weeks later, Highsmith received a call from a trial coordinator who told her that her participation was no longer wanted, because “the sponsor has decided to de-prioritize Blacks.”
“Literally, they said that,” Highsmith says. “It’s still in my head … and I just think, ‘What if I had cancer?’ And the healthcare system is going to treat me, when I am at my lowest moment, like that … they just told me I didn’t matter.”
Highsmith’s story is not unique. People of color and other medically disenfranchised groups long have received lesser care, rooted in what Jack Resneck, President-Elect of the American Medical Association, calls “historic systemic racism, the historic mistreatment that we’ve seen. The evidence goes all the way back to unethical experiments on slaves, to Tuskegee, to experiments on prisoners, to more recent evidence. And the contemporary lived experience of our patients who come in and feel that they are not treated the same—and where we have increasing evidence that’s the case.”
Roundtable participants agreed that the pandemic has made these inequities more pronounced. A recent study found that in 2020, Black, Latino, and Native American deaths related to COVID-19 were “at least 2 times higher” than those of their white counterparts, and people in those groups also died at higher rates than white patients because of medical conditions like diabetes, heart disease, and Alzheimer’s.
The study also concluded that structural factors ranging from racism to less access to healthcare to chronically underfunded care facilities contributed to disparate outcomes for communities of color.
“Deeply entrenched inequities in healthcare are impeding our ability to deliver for all patients,” Hardy said. “Clinical trial results that don’t reflect real world demographics aren’t always applicable to the patient groups most in need. Medical advances that don’t reach everyone are simply not as impactful as they could or should be. Now as the science and technology moves forward, it’s absolutely unacceptable that so many people are being left behind.”
Growing distrust is compounding these inequities. During the work and school closures and other public health measures taken in the spring of 2020 to slow the spread of the coronavirus, Mohamed Younis, the Editor-in-Chief of Gallup News, noticed an unusual trend in his company’s public opinion polls, which track and measure people’s attitudes toward the American healthcare system.
“Americans were slightly impressed at the peak of the lockdown with healthcare providers and the healthcare system,” he said. “Particularly the people involved in healthcare.” This was the time of hailing frontline healthcare workers as heroes—and of people in New York City applauding those workers every evening.
“But that [sentiment] has really crumbled this year,” Younis said. “It has really come down significantly.”
“Providers recognize the need to build trust with their patients. But patients still feel that trust-building behaviors—such as time spent with them, whether they're perceived as listening to them, if they make eye contact with their patients—those trust-building behaviors actually are still lacking.”
Director of Digital Strategies & Outreach, Public Health, NORC Amelia Burke-Garcia
Younis attributes this decline not only to the ongoing health challenges and controversies created by the pandemic, but also preexisting health equity gaps with geographic, socioeconomic, and racial dimensions. “The public has become more perceptive of widespread discrimination against Black people. This year, we found in a national poll of Black adults that about one in six Black Americans report having experienced mistreatment in a healthcare setting in the past month.”
Amelia Burke-Garcia, a public health communicator and Director of Digital Strategies & Outreach, Public Health, NORC at the University of Chicago, sees similar patterns in her own research, which focuses on social media and behavior. “Patient trust in the healthcare system and in providers is lower amongst communities of color and other marginalized populations, like LGBTQIA,” she said. “That has also decreased during the pandemic.”
The Genentech national survey found that the vast majority of providers reported feeling that they are sensitive to the needs and emotions of patients. By contrast, more than half of disenfranchised patents reported not feeling understood by their providers.
Burke-Garcia noted other NORC work that has uncovered parallel disconnects. “Providers recognize the need to build trust with their patients,” she said. “But patients still feel that trust-building behaviors—such as time spent with them, whether they’re perceived as listening to them, if they make eye contact with their patients—those trust-building behaviors actually are still lacking.”
Without trust between providers and patients, panelists said, the communication and cooperation that is essential to quality care suffers. Misinformation has been a major problem during the pandemic, with conspiracy theories, rumors and misleading news reports spread via social media contributing to lagging coronavirus vaccination rates in Black and Hispanic communities.
According to the Genentech survey, 47 percent of medically disenfranchised patients don’t ask questions of their providers because they are afraid of looking unintelligent. Meanwhile, the overwhelming majority of providers (90 percent) have witnessed their own patients stopping care.
“We have to invest in the conversations, not just for physicians and patients, but also with public health advocates, and community-based activists, community health workers, nurses,” says Winston Wong, a Scholar in Residence at the UCLA Kaiser Permanente Center for Health Equity. “These are the trusted individuals that actually are organic to the communities. And we have not had enough discussion around our healthcare system, investing in non-physician messengers, and conduits for building the trust between the public at-large and communities that have been marginalized.”
When Genentech started the EMPACTA trial for the treatment of COVID-19 pneumonia with one of their medicines, the company ran into a problem while trying to reach traditionally underserved minority patients.
“It was very difficult to initially enroll patients,” said Jamie Freedman, Head of U.S. Medical Affairs at Genentech.
"It started with just the consent, getting [patients] in the trial. But what we also heard from patients is, once the trial's over, they don't want us to leave the community—because you lose the trust. You have to continuously build trust over time.”
To find enrollees, Freedman said, the company went to a number of undeserved, community-based hospitals. “But that wasn’t good enough,” he said. What we learned is the most significant factor to be able to get those patients is the person consenting the patient should be the same race, and that will lead to much greater trust.”
Eventually, Highsmith said, the study reached 85 percent enrollment from communities of color.
“Building trust is going to take a long time,” he said. “It started with just the consent, getting [patients] in the trial. But what we also heard from patients is, once the trial’s over, they don’t want us to leave the community—because you lose the trust. You have to continuously build trust over time. It’s not like you can do one thing, and then all of a sudden you build trust.”
Panelists agreed that building equity and trust in the healthcare system will require improving communication and relationships between patients and providers—something that is particularly important in communities of color, where many patients feel dismissed and disregarded, often for reasons that go far beyond their experiences with doctors or medicine.
“The American government had a 100-year policy of removing our children forcibly from our homes and saying, ‘kill the Indian, save the man,’” said Stacy A. Bohlen, the Chief Executive Officer of the National Indian Health Board and a citizen of the Sault Ste. Marie Tribe of Chippewa Indians. “How do you recover from that? How are people healing from that? When this pandemic came along, we’re already struggling with a treaty-promised healthcare system that is funded at 40 percent of need.”
Like Wong, many of the panelists recommended a more collaborative approach to patient-provider relationships—one in which providers see patients and community members as experts in their own experiences, listen to and respect their voices and points of view, and work with them to co-create their care.
“We always start this conversation from the point of view of the provider of the healthcare system” said Gwen Darien, Executive Vice President of Patient Advocacy and Engagement for the National Patient Advocate Foundation. “We don’t turn the lens and look at it from the perspective of patients and families and communities. If the healthcare system doesn’t trust the patients that it serves, patients are never going to trust the healthcare system. I think that is where we have to start. Nothing’s going to change until we start with turning the lens around.”
To help turn the lens around, Resneck said, the healthcare system must become more representative. That means recruiting and training more physicians of color—and investing more resources into hospitals and other providers that serve communities of color.
“Less than 12 percent of physicians are from underrepresented minorities” he said. “That’s more than 30 percent of our population of patients who are not seeing a healthcare workforce that in any way reflects who they are.”
Freedman agreed. In Native American communities, he said, “a lot of the patients are treated on reservations. And then if they need more advanced care, they need to be referred to hub centers or larger academic centers. But those centers, we’ve heard, are not culturally sensitive. And there’s not a lot of Native American healthcare workers in the larger hospitals. So are there things that we should be doing about that as well, to help train more Native Americans to be physicians?”
To fund education and training for more physicians and other providers of color, Bohlen suggested rethinking taxes on student loans, creating more scholarships for students of color, and considering diversity mandates as part of the funding requirements for medical education and residency programs.
“The MED program at the University of North Dakota requires a certain number of seats to be filled by an American Indian or Alaska native,” she said. “They’re fully funded by the federal government, and if they’re not filled by an American Indian or Alaska Native, they go unfilled, unpaid, undone. That’s a pretty strong incentive to fill those seats with qualified American Indian and Alaska Native people.”
Throughout the conversation, panelists agreed that a crucial first step to building trust is acknowledging, understanding, and teaching others about the history of marginalized communities and their experience with the medical system.
“Part of the way that we rebuild trust is that patients need to see us in all parts of healthcare struggling with and reckoning with our own histories—and fostering those pathways for trust and healing,” Resneck said. “I think that there is a short-term effect of maybe as people learn about those histories, they distrust us even more. But it is a critical part of the pathway to longer trust development [for patients to see] that we are reckoning with it.”
Many panelists said that in order to reckon with healthcare’s long history of racism and marginalization of communities of color, medical education needs to be revamped. “[In medical school] I wasn’t given the skills to address inequities in my community,” Resneck said. “If we are depending on a few [Diversity, Equity, and Inclusion] sessions to fix decades of what formed who people are, then that’s an unrealistic expectation. We have to go upstream.”
Similarly, Joy Lewis, the Senior Vice President of Health Equity Strategies at the American Hospital Association, said that a rethink of current cultural competency training may be in order. ““We’ve actually stepped away from using the term ‘cultural competency,’ and we now talk about rendering care with ‘cultural humility,’” she said. “I think it actually is not possible to become culturally competent in someone else’s culture … it’s, ‘how do you approach each patient encounter with a level of respect with the level of empowering that patient to actually show up in their own lives?’”
Ultimately, panelists said, building equity and trust will increase empathy and respect between providers and patients—which, in turn, will improve care for marginalized individuals and communities. One panelist offered a simple and personal rule of thumb for providers: Treat all your patients as if they were your mother or father, or someone you love deeply.
“There are researchers who are trying their best to diversify their trials, their studies,” she said. “But when you talk to the people who have been through the trial, they’re not happy. And there’s been some [studies showing] that a large percentage will never do it again, because they don’t feel like they were treated respectfully and with dignity in the trial once they got in.”
Georges Benjamin, the Executive Director of the American Public Health Association, can relate. A longtime doctor who also is African American, he remembers visiting with other healthcare providers, sometimes as a patient. “They would say something to me which was demeaning,” he said. “I would point to their license on the wall, so they can see my signature—since I was the health secretary on their medical license.”
Ultimately, Benjamin said, distrust and inequities within the healthcare system reflect the larger world outside of it—and that addressing one means addressing the other.
“We’ve all had those experiences, where we’ve not been treated with respect,” he said. “And I think, fundamentally, we have to make sure that we recognize that with the health system, we can’t fix it without thinking much more broadly about how we fix our society.”