Tag: Public health

Melanie Hoenig was teaching first-year medical students how to estimate kidney function when one of them, Cameron Nutt, raised his hand. Why, he asked, did the diagnostic algorithm include an adjustment for Black patients? In the U.S., Black people have higher rates of kidney disease and kidney failure and are less likely to get a kidney transplant than white people, but the adjustment makes it seem as though Black people have better kidney function than people of other races who have the same test results.

Good question, thought Hoenig, a kidney specialist at Beth Israel Deaconess Medical Center in Boston. She had never wondered why this might be. “I said, ‘You’re right. That doesn’t make any sense,’” Hoenig recalls of the 2016 classroom conversation.

This value for kidney function, called the estimated glomerular filtration rate (eGFR), helps doctors figure out when to send patients to a specialist, when to start dialysis, when they are eligible to join the wait list for a kidney transplant, and where their name lands on that list. Adjusting the algorithm for Black patients decreased their chances for treatment and transplant.

Innovations In Solutions For Health Equity

The equations and instruments doctors rely on are infused with historical bias. Medicine has long treated race as though it provides important information about the underlying biology and genetics of disease, a strategy that has had an enormous impact on diagnosis and treatments. People have been passed over for kidney transplants, denied therapies and diagnosed with diseases later than necessary simply because of the color of their skin.

Race is a social construct that reveals little about ancestry. There is more genetic variation within racial groups than between them. “The racial differences found in large datasets most likely often reflect effects of racism—that is, the experience of being Black in America rather than being Black itself,” researchers wrote in a 2020 New England Journal of Medicine article outlining the dangers of race-adjusted algorithms.

To undo this bias, researchers are changing the algorithms and instruments and finding new models to reduce disparities.

Kidneys filter waste and excess water from the blood through tiny structures called glomeruli. Directly measuring how well these glomeruli are functioning is possible but cumbersome, so instead doctors rely on blood levels of a protein called creatinine, a waste product produced by muscles and a by-product of protein metabolism, to estimate the glomerular filtration rate (GFR). When kidneys are working well, they filter out creatinine; if the kidneys start to fail, creatinine levels rise. The protein is easy and inexpensive for laboratories to measure.

The first equation to assess kidney function, developed in the 1970s, relied on age, sex, weight and creatinine levels in the blood. But the formula wasn’t precise. So, in the late 1990s, a team of researchers set out to develop a more accurate one. They used existing data from a study of creatinine and GFR in more than 1,600 people, then correlated the two measurements. The team looked at 16 different factors that might influence the relationship. (We tend to lose muscle mass as we age, for example, so older people have lower creatinine levels than younger people.) The authors noted that for any given GFR, creatinine was higher in Black people than in white people. Why that might be wasn’t clear. Maybe it was because Black people had higher muscle mass, they speculated. The study population was only 12 percent Black, yet the difference felt too substantial to ignore.

To account for this difference, the researchers added an adjustment for Black patients: a multiplication factor of up to 1.21, which essentially inflated their estimated kidney function by as much as 21 percent. In 2009 the researchers published an updated equation, but the Black correction factor remained, albeit lower, up to 1.16. “We always recognized that race was not the biological process by which African Americans differed from non–African Americans in the relationship between GFR and creatinine,” Andrew Levey, who worked to develop both equations, later explained. But “it stood in for something that was important.”

“The way the lab report was written was, if your creatinine is a 4.0, your kidney function is 19 percent. Oh, unless you’re African American; then it’s 22 percent,” says Martha Pavlakis, a nephrologist at Beth Israel Deaconess. “It makes no sense.” In people with healthy kidneys, small differences don’t matter. But when kidney function declines, eGFR, which decreases as blood creatinine levels rise, becomes crucial. That number helps to determine whether a patient is referred to a nephrologist, diagnosed with kidney disease or deemed eligible to join the wait list for a kidney transplant.

Hoenig began working with a small group of students from Harvard Medical School’s Racial Justice Coalition to lobby to eliminate the correction factor, and in 2017 Beth Israel Deaconess became the first medical center to do so. Efforts elsewhere largely stalled until the deaths of George Floyd, Ahmaud Arbery and Breonna Taylor, three Black Americans whose deaths made national news. In the wake of their killings, conversations about race rippled throughout the medical community, Pavlakis says.

As protests erupted across the country, medical students and faculty at many major universities began to circulate petitions calling for an end to the use of the racial correction in eGFR. Some major academic health systems began removing race from the equation, but their approaches were inconsistent. Neil Powe, chief of medicine at Zuckerberg San Francisco General Hospital and Trauma Center, and other experts watched the changes unfold with concern. There was no unified way of diagnosing kidney disease. “You could be at one hospital and have a diagnosis of kidney disease. You go down the street [to another hospital], and you wouldn’t have kidney disease,” Powe says. “That was just chaos.”

In the summer of 2020 the National Kidney Foundation and the American Society of Nephrology formed a task force to assess how best to move forward. “They thought we’d solve it overnight, but it took us about 10 to 11 months to churn through this,” says Powe, who co-led the task force. Ultimately they chose an equation that used the same 2009 data but eliminated race as a variable, then refit the curve to the whole dataset.

A conversation about race was also happening at the Organ Procurement and Transplantation Network (OPTN), which manages transplants from deceased donors. The wait list for a kidney is long. Patients aren’t eligible to join until they meet certain criteria; these can vary at different transplant centers, but all candidates must have an eGFR of 20 percent or less. And because of the eGFR correction factor, Black patients needed higher creatinine levels than people of other races to pass that threshold. “Nobody who came up with the formula was like, let’s keep Black people off the list. But that, in fact, was the result,” Pavlakis says.

In July 2022 the race variable was explicitly forbidden in organ allocation. Pavlakis saw that as just the first step. She wanted to help Black patients already on the list and those who had previously been denied entry because of their kidney function numbers.

In January 2023 the OPTN decided that transplant centers should look back at the lab reports of Black patients on the list and recalculate their eGFR using the race-neutral equation to see whether they should have been referred for transplant. “Basically, half the Black patients on the transplant list got extra priority added to their standing because of this project,” Pavlakis says.

Pavlakis acknowledges that this change doesn’t fix every disparity in kidney allocation. But she also sees it as restorative justice. “It’s not perfect,” she says, but “I think it’s probably the largest example of fixing a race disparity that is out there.”

Pulmonologists have been grappling with a similar problem. To assess lung function, doctors ask patients to blow into a device called a spirometer, which measures the maximum amount of air a person can exhale and how much they can force out of their lungs in a single second. The spirometer compares those numbers with reference values for “normal” lung function. The results help doctors diagnose diseases such as emphysema and chronic obstructive pulmonary disease, assess severity of those conditions and monitor declines in lung function.

What constitutes “normal” varies by age, sex, height and, until recently, race. Why race? Data collected in the late 1800s and early 1900s suggested different races have different lung capacities, a phenomenon researchers ascribed to innate biology rather than social, economic or environmental factors. By the early 20th century the idea that lung capacity varied among racial groups was “an ostensible fact,” wrote Brown University researcher Lundy Braun in a 2015 article on the historical use of race in spirometry. What experts missed was that race was probably a proxy for other factors, such as air quality, nutrition, and other exposures, that affect lung health and development.

When the European Respiratory Society’s Global Lung Function Initiative developed reference values for spirometry in 2012, it used more than 160,000 spirometry results from 33 countries. Researchers observed “proportional differences in pulmonary function between ethnic groups” and decided to develop separate values for four groups: Caucasian, African American, North Asian and Southeast Asian. They also used an “other” category for people who didn’t fit elsewhere. The model assumes that, compared with white adults, Black adults have about 10 to 15 percent smaller lung capacity and that adults of Asian ancestry have 4 to 6 percent smaller lung capacity. So the same spirometry results in Black, Asian and white people led to different interpretations of health. As a result, lung diseases in certain populations have gone undiagnosed and untreated.

The division of reference values by race is problematic for many reasons. “We’re a big melting pot,” says Alexander Niven, a pulmonologist at the Mayo Clinic in Minnesota. So even if there were “a specific cluster of genes that predispose people to greater or less lung function, that’s highly unlikely to remain a pure cluster in this global world.”

What’s more, lungs are in constant contact with the outside world and continue developing throughout childhood and into early adulthood, Niven says. “It’s impossible to separate race from all of these other factors that unfortunately are inexplicably linked to different populations within our society, many of which are likely coloring the changes in lung function that we see in different social groups.”

In practice, the race-based model doesn’t seem to improve predictions when it comes to outcomes that matter. “You can’t tell any better who’s going to go to the hospital. You can’t tell any better who’s going to die. You can’t tell any better who has severe symptoms and who doesn’t. And in some of those cases, you actually worsen your ability to predict by adding race,” says Aaron Baugh, a pulmonary and critical care physician at the University of California, San Francisco.

In 2023 the Global Lung Function Initiative replaced race-based equations with a race-neutral equation. That same year the American Thoracic Society and the European Respiratory Society recommended all health-care providers switch to the new formula.

That shift is happening now, and researchers are just beginning to uncover the broad impact of this change. “Long story short, it’s profound,” says Arjun Manrai, a bioinformatics researcher at Harvard Medical School. Lung function helps to determine disability payments, candidacy for some professions, priority for lung transplants, and more. Manrai and his colleagues found that some 10 million people in the U.S. would have their diagnosis or the severity of their disease reclassified. Disability payments could increase by more than $1 billion. Such changes are not always beneficial. A new diagnosis can make someone ineligible for certain jobs, such as firefighting. And a Black person with lung cancer might not be identified as a good candidate for surgery because their lung function may be too poor to allow for removal of part of their lung. “There are trade-offs essentially attached to these reclassifications,” Manrai says.

The new equation comes from the same 2012 data as the original formula, and it isn’t perfect. “We kind of settled on the race-neutral equations we have now as the best current option, knowing that in the future, something better might arise,” Baugh says.

Manrai thinks a lot about how traditional algorithms operationalize race, adjusting what constitutes “normal” for any particular patient, and how lessons from those algorithms can be incorporated into producing more sophisticated machine-learning algorithms. “They can be biased, and they can propagate the very same sort of race-based medicine,” he says. “But they’re a tool, and the tool can also be used in the reverse direction: to mitigate existing disparities and to potentially reduce existing biases in the health-care system.”

One example of how AI might help improve health equity is evident in research on disparities in knee pain. Previous studies have shown that Black people routinely report more intense knee pain from arthritis than people of other races. But often that pain can’t be explained by the structural damage visible in x-rays. As a result, it is often dismissed or attributed to external factors such as psychological stress.

Emma Pierson, who studies machine learning and health-care inequities at Cornell University, and her colleagues wanted to understand whether there might be physical signs in the knee itself that could explain this pain disparity. They used knee radiographs and patient pain scores from more than 4,000 people who had osteoarthritis or were at risk of developing it to train a machine-learning model.

Surprisingly, the model predicted pain better than the traditional arthritis scoring system. Specifically, Pierson says, “it seems to be picking up on factors that disproportionately affect underserved patients.” What those factors might be isn’t clear, and Pierson emphasizes a need for caution. “In general, the capabilities of these models tend to outstrip our ability to understand how they’re achieving those capabilities,” she says.

Sometimes diagnostic instruments introduce bias. The fingertip clamps doctors use to measure oxygen levels in the blood, for example, work by measuring the absorption of different wavelengths of light to estimate the blood oxygen level. But the device, called a pulse oximeter, tends to overestimate oxygen saturation in people with darker skin tones.

Researchers have known about this problem for decades, but manufacturers didn’t feel much pressure to fix the problem. The effect was relatively minor, and it was most prominent at low oxygen saturations. “That difference was probably correctly assumed to not be physiologically relevant,” says Michael Lipnick, an anesthesiologist at the University of California, San Francisco, who leads a research project to assess pulse oximeter performance. “If somebody’s oxygen saturation is really 1 percent or even 2 percent higher or lower than the real value, there’s no harm.”

When the COVID pandemic sickened millions of people, however, small biases had an outsize effect. “Clinical decisions were being made based on that number,” Lipnick says. In 2023 a team of researchers looked at health records from more than 24,000 people hospitalized with COVID during the first 19 months of the pandemic. They zeroed in on those who had both a pulse oximeter reading and an arterial blood gas test, the gold standard for measuring oxygen saturation in the blood. Pulse oximeter readings consistently overestimated oxygen levels in Black and Hispanic patients. Black patients were also more likely than white patients to have their need for COVID therapy underestimated because of inaccurate pulse oximeter readings. Such oversight has clinical consequences: being passed over for COVID treatment resulted in an hour’s delay in care on average and a higher risk of readmission.

Lipnick is part of the Open Oximetry Project, which has been testing different pulse oximeters in diverse groups to get a sense of their real-world performance. He and his colleagues have seen a range of variability. Most devices tended to perform worse when used on people with darker skin pigment, but some performed better.

Researchers are working to develop more accurate tools, and regulators are considering larger test populations with a variety of skin tones. Lipnick wants better pulse oximeters but worries that some of the fixes may increase costs. “It’s a big concern, especially in low- and middle-income countries, where the majority of the world’s people with darker skin pigment live,” he says.

In the short term, Lipnick says, clinicians should rethink how they use data from pulse oximeters. “It gives a number, and we assume that that number is truth.” In reality, the number might be off by as much as 5 percent. If doctors recognize the error rate, they can make decisions that aim to minimize health-care disparities. “I think a lot of the solution will lie in how we use the technology,” he says.

Pavlakis also sees a need for more critical thinking on the part of clinicians. She is dismayed at the number of years that she relied on the eGFR equation without stopping to carefully consider the rationale for its race correction. “When we were taught this formula, we were like, ‘This is data-driven. This is from a research study. This must be accurate,’” she says. Evidence-based, however, doesn’t always mean equitable, and that’s the real goal. Hoenig’s students and other people who recognized bias are making health care better for all.

The journey toward health equity can, at times, feel endless. But it can also be exciting and inspiring. Scientific American asked some of the researchers, physicians, advocates, and others working on health equity what they are most hopeful about. Each had numerous concerns but also reasons for optimism. They pointed to progress in widening access to health care, making science more inclusive, and reducing the health burden of systemic racism and other biases. They are also emboldened by the energy and enthusiasm of their colleagues working to advance health equity.

“Any level of justice work has to be rooted in a context of hope, right?” says Aletha Maybank, chief health equity officer at the American Medical Association. “A hope and faith that we will all be able to have an experience of optimal health.”

Madhukar Pai

Chair, Epidemiology and Global Health, McGill University

My biggest source of hope is young people. It’s the youngest people who are shining a clear light on why climate change is devastating and why leaders are not acting on what has been obvious for many years. It’s the youngest people who are doing great work in the U.S. on gun control, even as they’re getting slaughtered in schools. It’s the young people who are alarmed about the rollback of reproductive rights in the U.S., in Afghanistan, you name it.

I feel like their moral clarity is the clearest because, unlike older people who already bought into something or were worried about their next paycheck or position or winning awards, young people are devastatingly clear in terms of what’s wrong. Their problem statements are spectacularly accurate and on point, and so they give me a huge amount of hope. That’s partly why I still teach global health to young people.

Just fanning their energy, their passion, might well be the biggest source of hope for all of humankind. But we need to go beyond that because although their diagnosis is perfect, their ability to act is limited. They’re not in power; they often are not voting. They’re usually given two minutes to speak at the front end of the meeting and shown out of the door while the adults are making big decisions. So how do we potentiate them to go beyond just sound bites or nice photo ops to action and give them empowered ways of doing things?

Seye Abimbola

Associate Professor, Health Systems, University of Sydney

One of the things about which I’m hopeful is a growing confidence and restlessness and disquiet from global health professionals and academics from and in the Global South about how the field itself works and needs to change. Historically the field was premised on this idea that the West—or the Global North, as we refer to it today—has a right and a duty to impose itself on the rest of the world.

For example, if someone wanted to do a study in Nigeria and the people who are going to lead it come from London, they would rely on a lot of the infrastructure in Nigeria but disregard that the local collaborators know anything. Then they go home and write this paper and publish it in the BMJ or in the Lancet. Now, for me, what I think has changed, what I see changing more and more, is the pushback on that. That’s just the tip of the iceberg. But that physically measurable, countable phenomenon of partnership research sits on a whole bed of assumptions and normalized practices that we took from the colonial experience.

Rachel Hardeman

Director, Center for Antiracism Research for Health Equity, University of Minnesota School of Public Health

One of the things that gives me hope is the work that I’m doing, along with many other incredibly brilliant scholars across the country, around measuring racism. In my work and within our research center, we have to be able to make the invisible visible. Racism is so often passed off as this insidious thing that is baked into the system, and it’s so hard to identify, especially when it’s not an explicit interaction with someone.

In a lot of my work and in what I’m seeing across the country with other scholars—incredibly brilliant Black scholars in particular—is an investment and interest in figuring out how we leverage data to measure structural and other forms of racism and then how to use that to inform policy change. We’re coalescing around the need to understand that health policy and social policy go hand in hand. We can’t, for example, talk about historical redlining and racial covenants and birth outcomes in those communities without having the data, without understanding the history as well as what’s happening currently. And then using that to inform housing policy just as much as we might use that evidence to inform health policy.

Wafaa El-Sadr

Director, Global Health Initiative, Columbia University mailman school of public health

When I think back to what things looked like 25 years ago, compared with today, it’s night and day. Investments in health systems, largely driven by the HIV epidemic, have borne fruit in amazing ways. No services were available, or those that did exist were fractured. There were no resources; there was no access to medicines or lab tests. It’s just been an enormous transformation in only a couple of decades, so that gives me hope for the future.

More than 20 years ago I remember going to a clinic very far away from the capital city in one of the provinces in South Africa. There was nothing available for HIV testing or for treatment, and, I remember this vividly, this nurse very proudly opened a notebook that she had in a drawer in her very rickety desk and said, “I have a list of people here who need treatment.” And then she pulled out another sheet of paper, and she said, “Look at this. I have a certificate. I’ve been trained. I’m ready. I want to save my people.” And I remember walking away thinking, “This gives me hope. There are people who care about their communities. They’re ready, they’re willing.” And I’ll never forget that, and I’ll never forget the look on her face of “I can’t wait anymore.”

Barney Graham

Founding Director, David Satcher Global Health Equity Institute, Morehouse School of Medicine

Hopefulness comes from a faith and belief that things have a way of evolving toward the good. The moral arc of the universe bends toward the good. But it may take a long time. Helping to diversify the public health workforce through creating more opportunities and knowledge for students is a multigenerational process.

Four African American students did almost all the bench work that was needed to get the Moderna COVID vaccine into that first phase 1 trial in March 2020. We’re very proud of them for getting that whole vaccine program launched.

We must change the narrative of what people can do and what they are able to do and start asking, Who gets to be trained? Who gets to have the knowledge? Who gets to make the decisions? Who gets to decide what to make and where it goes? All those decisions happen at some level of leadership. If you diversify that leadership, you will have a better, more balanced opinion about how things should be done. That’s how you start moving toward equity.

Aletha Maybank

Chief Health Equity Officer, American Medical Association

It’s helpful looking at progress. The past four years, since the public murder of George Floyd, there is now the ability to mention racism where you couldn’t before. Prior to the public murder of George Floyd, folks would never have expected the AMA to make a statement about racism being a public health threat. And then the AMA’s House of Delegates passed a policy that really reaffirms ridding medicine of medical essentialism and ridding medicine of the use of race as a proxy for biology. That has been aligned with a movement around getting rid of racist algorithms, clinical algorithms. That would have never started without this national and collective movement to name racism and the exposure of inequities during COVID. That response and that collective response do provide hope.

On a frigid winter evening about five years ago, a desperately ill young woman walked through the doors of the Sanford Bemidji Medical Center in rural Minnesota. Several weeks before, she had labored alone for hours in her tiny mobile home to bring a new baby into the world. The woman had received no prenatal care and no medical attention at delivery—the kind of situation that has made maternal mortality rates for Native American women in rural areas twice as high as those of white women. The only reason she was showing up now was that the baby wasn’t eating. She had no running water to make formula. The hospital was her only option. Johnna Nynas, the obstetrician on call, quickly diagnosed her patient with postpartum preeclampsia, a rare condition that affects people after pregnancy and can be deadly if untreated.

For Nynas’s pregnant patients, the hospital in Bemidji is the only option between Duluth, Minn. (three hours away), and Fargo, N.D. (2.5 hours away). The surrounding area is one of the poorest in Minnesota. Some residents of the nearby Leech Lake, Red Lake and White Earth Indian Reservations don’t have reliable access to running water. With so many pressing unmet needs, people find it difficult to get prenatal care. Transportation (especially in winter) and child care for medical visits that require a several-hour car ride and possibly an overnight hotel stay are often unaffordable, even if Medicaid covers the cost of the health care. Nynas, who was born and raised in rural Minnesota, says that by the time an expectant parent arrives in her office, they may have a list of health concerns that have gone untreated for years. She links this lack of care directly to the elevated risk of pregnancy-related deaths and complications in the region.

“When we first meet patients, it’s probably the first contact they’ve had with the health-care system in quite some time,” Nynas says. Haunted by her patient’s preeclampsia emergency, she set out to remove barriers to needed care. Loaned blood pressure cuffs and bathroom scales let many of her low-risk patients receive checkups over the phone. This communication made it easier to schedule in-person visits for ultrasounds and blood tests.

Innovations In Solutions For Health Equity

David Driscoll, director of the Healthy Appalachia Institute at the University of Virginia, isn’t surprised that the impetus for change began in a rural area. The regions that face staggering health inequalities are developing innovative solutions to enhance well-being for everyone. Rural communities’ perpetual need to do more with less and to overcome obstacles not found elsewhere has led to modernized care delivery. Although many of the innovations are tech-centric, not all require Internet access to work. These shifts are helping doctors bring world-class medical care to even the most far-flung patients.

One challenge for rural health experts is to ensure solutions don’t exacerbate existing disparities. Doctor visits via a video call won’t help someone without an adequate Internet connection, for example. But advocates say thoughtful action paired with infrastructure investment will broaden access to services.

Simple equipment sent home with low-risk pregnant patients helped Nynas’s northern Minnesota families deliver healthy infants. Nynas’s success with home devices such as bathroom scales, blood pressure cuffs and fetal heart-rate monitors convinced her to expand her reach. Collaborating with several local community groups, Nynas applied for a grant from the federal government’s Rural Maternity and Obstetric Management Strategies program. With this funding, Nynas was able to not only expand patients’ virtual care but also provide additional local resources, such as an in-hospital food pantry, transportation services and a visiting-nurses program. She is setting up a satellite clinic at an Indian Health Service facility, which typically has limited prenatal services. This approach will let patients without home Internet or phones upload their data and connect with nearby providers in consultation with remote experts for complex pregnancies.

Health-care micro sites such as these act as a bridge between major medical centers and small communities and are showing huge promise in rural health, says Michael Carney, interim provost at the University of Wisconsin–Eau Claire, because they combine the best of telemedicine and in-person care. Patients without broadband Internet can go to a local clinic and talk to a specialist online. Nurses and other providers at the local clinic can do bloodwork, measure vital signs and nurture the doctor-patient relationship. These micro sites are the flagship of the University of Wisconsin’s ongoing rural health partnership with the Mayo Clinic, Carney says, and are intended to bolster the health of his hometown. Carney says practitioners worldwide are asking, “How do we deliver health care in a cost-effective way to people who can’t come to a traditional clinic?”

In southwestern Virginia, where Driscoll grew up, the distances between two points aren’t that far as the crow flies. But the residents of the area’s tiny towns and hollers aren’t crows. The narrow, winding roads mean even seemingly short drives can take hours. Without public transportation, many of the area’s older adults can’t travel to medical appointments. Driscoll’s first job, in the 1990s, was with a community organization that drove local patients to clinics and hospitals.

Driscoll chatted with his passengers, listening to their problems. Many said the doctor’s visit they were headed to was their first in years because they had been physically unable to get to appointments. Multiple, untreated chronic diseases such as asthma, diabetes and hypertension were the rule, not the exception. With poverty rates high and grocery stores few and far between, most of his passengers experienced food insecurity, and their diets lacked fresh fruits and vegetables. The few people who had home Internet relied on dial-up because broadband wasn’t available yet.

Rural communities in Virginia and around the world face many of the same challenges—lack of clean drinking water, unreliable transportation, lagging investments in infrastructure and technology, and hospital and clinic closures. Driscoll’s conversations revealed precisely how those challenges contribute to health disparities. It sparked his lifelong interest in rural health and ultimately brought him back home to the rugged hills where Virginia disappears into Tennessee and Kentucky.

Today, with a $5.1-million federal grant, Driscoll is addressing problems that have been amplified by the COVID pandemic. According to one study, so-called diseases of despair, including opiate misuse and overdose, suicide and alcohol-related liver disease, spiked by 40 percent in central Appalachia during the beginning of the pandemic. As a result, the number of premature deaths in Appalachia is 25 percent higher than in the rest of the U.S.

Like many rural health programs, the efforts at the University of Virginia rely extensively on telehealth. That’s largely because in the mid-1980s, awareness of these kinds of health disparities (and their origins) dovetailed with emerging technological breakthroughs. As a policy analyst at the Virginia Department of Health, Kathy Wibberly was tasked with helping to address deficits in health-care access in rural parts of the state. One of the solutions that emerged was the potential for telemedicine. Many of the region’s small, rural hospitals didn’t have the patient volume to warrant hiring, say, a neurologist or a neonatologist. Very sick newborns or people experiencing a potential stroke would have to be sent by ambulance or helicopter to a large medical center, often hours away. Such delays in care can prove deadly. “With stroke, time is precious. You’re saving the brain,” Wibberly says.

Instead of moving patients, Wibberly began working to connect small hospitals with their large, urban counterparts via videoconferencing and other technologies. Rural physicians could consult with on-call specialists in distant parts of the state to stabilize or manage fragile patients. This approach, she says, “saved lives and saved brains and saved disability further down the road.” In 2019 more than one quarter of U.S. hospitals had the capacity for telehealth-based stroke care.

After some initial success, Wibberly began trying to expand telehealth access. Her biggest problem, however, wasn’t related to technology. It was convincing patients, insurers and especially physicians that the approach could work. Few doctors have received telemedicine training during their residencies and internships, then or now, Wibberly says. They learn to see patients in person—that’s the model they’re trained with and used to.

“Yet at the same time, the landscape has changed,” Wibberly says. Medicine is no longer strictly an in-office practice. COVID accelerated the adoption and acceptance of telemedicine, and it has become a mainstay of rural health care, she says, especially in behavioral health care and psychiatry.

Telehealth alone can’t fix all the health problems facing rural areas. Limited broadband access means not everyone can set up a video chat with their doctor. And a lot of medical care requires in-person visits and readily available providers—things that aren’t guaranteed as rural hospitals continue to shrink or close. To tackle these issues, providers have gotten creative.

A diagnosis of kidney failure is life-altering. For residents of the remote Australian outback, it can be doubly so. The Pintubi people returned to Kintore, around 500 kilometers west of Alice Springs in the Northern Territory, in the 1980s after forced displacement by the Australian government starting in the 1940s. Those who needed dialysis had to leave again to receive care at the nearest clinics in Alice Springs or Darwin. Indigenous peoples such as the Pintubi make up almost 4 percent of Australia’s population and more than 14 percent of people on dialysis in the country. In 2016 research showed that Aboriginal people’s kidneys reached end-stage failure decades sooner than the kidneys of non-Indigenous Australians and New Zealanders, and an earlier study had found they were 1.5 times more likely to die on dialysis. For those who survived, quality of life was low.

Aboriginal Australians wanted to be “on country”—to live in their ancestral homelands with loved ones—while on dialysis. When the Australian government rebuffed their requests, Indigenous artists auctioned their work to raise more than $1 million (AUD) to build a nonprofit dialysis clinic, Purple House, in Kintore.

But bringing dialysis to an area where sheep overwhelmingly outnumbered people wasn’t an easy proposal. What’s more, dialysis is a thirsty procedure, using hundreds of liters of water for a single week’s treatment. Such a water-intensive therapy is ill-suited to the outback, which contains some of the driest biomes in the world. Purple House CEO Sarah Brown, who was tapped to lead the organization after a long career as a bush nurse, needed a therapy she could bring to her patients that merely sipped from the region’s scarce water supply.

To make matters worse, what limited water does exist in the area’s deep wells has too much fluoride and other contaminants to be drinkable, let alone used in dialysis. To address the problem, a team of engineers developed a way to filter the water so it could be used for dialysis. Then, rather than discarding it, the clinic devised a setup that let it reuse the water to provide pressure for the system. Brown knew they also needed to work with community leaders to integrate traditional Aboriginal beliefs and healing into dialysis treatments.

Over the next 20 years the Purple House transformed dialysis in Australia. In recognition of its efforts, the government created a special billing code to allow more nurses to deliver dialysis in remote communities. “We have gone from the worst survival rates in the country to the best,” Brown says.

Brown’s group also built a traveling dialysis bus known as the Purple Truck. The bus visits communities not served by the clinics and allows residents of Alice Springs and Darwin to visit family. Both survival and quality of life have improved. Now densely populated regions such as Sydney and Melbourne have built their own dialysis buses. The approach not only brings access to the life-saving therapy but allows Australians to travel without missing crucial dialysis sessions.

Brown remade dialysis from the ground up. “We’re disruptors,” she says. “You don’t have to assume that something is going to stay the same. You can work together, and you can change the system.”

A maternal mental health program has had a similar impact in parts of rural Pakistan. To address growing global mental health needs, Atif Rahman, a researcher at the University of Liverpool in England, has developed short-term interventions that can be delivered by peers and other nonspecialists. The idea, he says, is to bolster access to behavioral health care, especially where treatment is virtually nonexistent.

Many of Rahman’s efforts have focused on perinatal health in Pakistan, where he is originally from. His team trained rural community members there to deliver coaching sessions to decrease the mental health struggles of new moms. “It’s a powerful combination,” Rahman says. “We are freeing the peer to be more of a human support.”

With a worldwide shortage of mental health workers, especially in the Global South, being able to rely on nonprofessionals opens doors to those most in need. Rahman says the community members in his program “are doing as good a job as trained therapists who spend years and years training.” He is now expanding the perinatal mental health program to parts of other low- and middle-income countries.

Not all these experiments in rural health will prove successful or be transferable to other communities, says Lauren Eberly of the University of Pennsylvania, a cardiologist who developed a phone-based treatment program for people with heart failure who live in the Navajo Nation. Different rural communities have different needs and barriers, she says, and scientists must gain local input and insight to determine what help people need and what they will accept. Researchers have to start by asking questions and listening to feedback rather than assuming they know how to solve long-standing, deep-seated problems, Eberly says.

“The traditional health-care system really benefits those who are fluent and those who are white. It’s really marginalized a lot of other groups,” Eberly says. “We really need to rethink how we can deliver health care in a way that makes sense for our communities and our patients.” The point, she says, is to use successful interventions as creative inspiration for solving other issues in health care and health equity.

Transportation issues aren’t limited to rural settings; they can affect urban areas, too. So can lack of broadband access, food insecurity, and other disparities. Because many innovations developed in rural areas target these broad problems, urban and suburban areas can also benefit from them. Telehealth is a prime example, Wibberly says. The advantages of telemedicine first appeared most obvious for rural areas, but the approach has gone mainstream. She is confident that other rural health programs will become standard medical practice.

To Wibberly, the reason so much innovation occurs in rural health is simple. “It’s a smaller community. People know one another. They know who the trusted entities are,” she says. “Let them figure out what will work for them because it’s a whole lot easier to fix access to care issues for a city of 20,000 than it is for one of 20 million.”

California’s Inland Empire is a broad swath of land east of Los Angeles, about five times the size of Connecticut, stretching through desert and surrounded by mountains. It’s one of the state’s fastest-growing regions, but it’s underresourced, with incomes and education levels lower than the state average. It is also medically underserved, with too few primary care physicians and specialists to adequately tend to the area’s increasing population. In the region’s many Spanish-speaking communities, finding a doctor who speaks the same language is difficult. And whether people can communicate well with their health-care providers affects patient outcomes.

Three years ago the Inland Empire Free Clinic opened in Colton, Calif., to provide free health and medical care and social services. Its clinic is staffed by physicians and medical students from the nearby California University of Science and Medicine. Many are proficient in Spanish, and those who aren’t work through interpreters. “The moment I talk in Spanish to patients, they change their attitude and are more open to tell me how they actually feel,” says Alexandra Lopez Vera, director of C.U.S.M.’s medical Spanish program, who coordinates interpreters for the clinic. “If I talk to a Latina who comes to see a doctor because they have a problem related to the reproductive system, they may feel like, ‘I feel embarrassed to tell this white guy who doesn’t speak my language about this situation that I’m having.’ They request for me to be with them.”

Research has shown that in the U.S., patients with limited English proficiency have a higher risk of hospital readmission and greater difficulty adhering to medication regimens. More than 25 million people who live in the U.S. have limited English proficiency. Because the majority of those are Spanish speakers, many medical schools now offer medical Spanish. C.U.S.M., which was founded in 2018, has made it mandatory. Finding a common language is just one way in which medical schools, clinics, hospitals and health-care networks are working to address health disparities as part of an increasingly visible movement known as culturally sensitive or concordant care.

When patients don’t trust the providers caring for them or when they feel dismissed or misunderstood, they’re less likely to share relevant information. And when providers don’t understand a patient’s life experiences and culture or don’t speak their language, they may be less likely to ask relevant questions. Culturally sensitive care starts with the premise that people come from diverse cultural, ethnic, religious and socioeconomic backgrounds and that understanding these differences is crucial for proper health care. Hospitals and medical schools are now adding tools to help their providers improve sensitivity around language, traditions and cultural expectations. The strategy is already advancing health equity. A growing body of research shows that by addressing bias and stigma directly in a rapidly diversifying patient population, culturally concordant care results in better health outcomes across a person’s lifespan—from prenatal and maternal health to pediatrics to end-of-life decisions.

Innovations In Solutions For Health Equity

Maternal mortality rates in the U.S. are higher than in any other high-income nation in the world. In 2022 that rate was about 22 deaths per 100,000 live births, according to the Centers for Disease Control and Prevention’s National Center for Health Statistics, down from almost 33 deaths per 100,000 live births in 2021.

The death rates are the worst in Black communities. Data from the Chicago Department of Public Health revealed that in 2019, Black women in Chicago were almost six times more likely than white women to die during pregnancy or within one year of giving birth. To try to reduce this number, the University of Illinois Hospital and Health Sciences System (UI Health) introduced a new initiative in 2022: its Melanated Group Midwifery Care program.

The midwifery group was born out of Karie Stewart’s frustration with a system that was failing Black and brown families. “The Black population is experiencing the most deadly outcomes when it comes to pregnancy,” says Stewart, a certified nurse-midwife at UI Health and one of the investigators leading the Melanated Group Midwifery Care program’s research. The patients she serves are predominantly Black and live on the west and south sides of Chicago, where a number of hospitals shut down their labor and delivery units during the worst of the COVID pandemic. “There is a lack of care for those already disadvantaged,” she says. Stewart approached Kylea Laina Liese and Stacie Geller of the University of Illinois Chicago, who study risk factors associated with maternal health, and together they made a plan, secured a $7.1-million research grant and got to work.

The research project includes people at all stages of pregnancy, from the first trimester to 12 months after birth. It matches Black pregnant people with Black midwives and is expanding prenatal care in communities with limited maternal health services. The program provides group education to support people in different stages of pregnancy, offers breastfeeding resources, helps participants with family planning after their babies are born, and ultimately reframes maternal and postpartum care in a way that respects Black patients’ needs and experiences in a health-care system still recovering from historical and systemic racism.

Today Stewart and her team are four years into the five-year grant, and they can point to qualitative changes in the community they serve. (The team expects to share quantitative data after the research period ends in 2025.) “We’re seeing folks use the health-care system more. They’re not running from it,” Stewart says. “They’re empowered from their maternity experience. They’re empowered to share what’s going on.” Given that many of these patients had previously avoided the health-care system, she sees this as a big win. “We want them to be engaged in their health care not just when they’re pregnant but after having a child and to seek care for anything else they have going on.”

In medical schools across the country, clinicians, faculty, administrators and students are reviewing their curricula to identify existing biases and teach cultural sensitivity to the next generation of physicians. When schools integrated information on racial disparities into their teachings, according to a 2019 study in Academic Medicine, students were more motivated to work in diverse communities.

In 2021 Temple University’s Lewis Katz School of Medicine in Philadelphia formed a task force of students and faculty to identify potential problems in the school’s course curricula, says Abiona Berkeley, an anesthesiologist and interim associate dean of the school’s diversity, equity and inclusion office. There were 346 instances in the curriculum, she says, “where we had an opportunity for development and growth.” These included dozens of examples of racial or ethnic stereotypes, as well as symptoms that had never been studied in groups representing a range of human skin tones. Berkeley says several members of the faculty have told her, “It’s changed the way I look at some of my patients and how I engage with them.”

Hillel Maresky, a cardiothoracic radiologist, arrived at Temple University in 2019, before the cultural sensitivity task force was assembled. He soon noticed an odd phenomenon. Many of his Black female patients had chest x-rays, computed tomography scans and magnetic resonance imaging (MRI) that seemed to include shadows or squiggly lines known as artifacts. He discovered that these artifacts were being caused by the women’s hair braids, locs and twists and the hair bands that held them in place. Certain hair oils and conditioners used by Black women also presented problems: the oils occasionally contain trace amounts of metals that interfere with MRI machines’ powerful magnets. “As I was compiling these cases, I learned that there really was a hole in the medical literature on this topic,” Maresky says.

When images are unclear or contain artifacts, patients must be scanned again. And additional testing means additional radiation exposure, as well as logistical challenges such as transportation or loss of hours at work. The lack of familiarity with these hairstyles and the lack of data regarding their effect on imaging present problems not only for radiologists but for clinicians in a wide range of medical fields.

Maresky began collecting a dataset that now includes more than 100 images of such artifacts that mirrored disease, and Angela Udongwo, a fourth-year medical student in his laboratory, has now presented their findings at a couple of conferences and to other medical schools in the Philadelphia area. They have also completed a pilot study on physicians’ awareness of and familiarity with Black hairstyles. “We found the length of your career correlated with how familiar and comfortable you are with identifying these hairstyles in imaging,” Udongwo says. But these are skills that can be taught. “There is no curriculum developed around teaching this.”

Udongwo is Nigerian American and has worn braids for years. While collecting research for the project, she heard one story after another about patients who encountered radiologists with little cultural sensitivity or understanding. It just doesn’t make sense, she says, that radiologists in 2024 aren’t familiar with these hairstyles.

Medical schools are beginning to catch up. In 1991–1992, researchers surveyed all 126 medical schools in the U.S. about whether they had implemented cultural-sensitivity training or had plans to do so in the future. Their results were published in 1994 in Academic Medicine. Of the 98 schools that responded, only 13 provided a cultural-sensitivity course, and only one of those was a requirement. Today medical schools, governments and hospitals across the U.S. have guidelines for cultural-sensitivity training. They’re expanding their sensitivity around communication, too: as of 2019, almost 80 percent of the nation’s medical schools offered medical Spanish.

Not only does language concordance improve outcomes, but it can also enhance patients’ experiences. A small study by Lopez Vera assessed patient satisfaction at the Spanish-friendly Inland Empire Free Clinic and found that those treated by a doctor who spoke their language had the highest satisfaction scores. These days, between technology and artificial intelligence, some people assume they don’t need to learn a new language, Lopez Vera says. But the evidence shows that the human-to-human approach is not just more empathetic but more effective.