Abortion

After Election Win, California’s AG Turns to Investigating Hospital Algorithms for Racial Bias

SACRAMENTO, Calif. — California Attorney General Rob Bonta sailed to victory in the Nov. 8 election, riding his progressive record on reproductive rights, gun control, and social justice reform. As he charts a course for his next four years, the 50-year-old Democrat wants to target racial discrimination in health care, including through an investigation of software programs and decision-making tools used by hospitals to treat patients.

Bonta, the first Filipino American to serve as the state’s top prosecutor, asked 30 hospital CEOs in August for a list of the commercial software programs their facilities use to support clinical decisions, schedule operating rooms, and guide billing practices. In exchange, he offered them confidentiality. His goal, Bonta told KHN, is to identify algorithms that may direct more attention and resources to white patients than to minorities, widening racial disparities in health care access, quality, and outcomes.

“Unequal access to our health care system needs to be combated and reversed, not carried forward and propagated, and algorithms have the power to do either,” Bonta said.

It’s too early to know what Bonta will find, and his office will not name the hospitals involved. The California Hospital Association said in a statement that such bias “has absolutely no place in medical treatment provided to any patient in any care setting” and declined to comment further.

Advocates have high hopes for what Bonta will find — and for the next four years. “We expect to see a lot more from him in this full term,” said Ron Coleman Baeza, managing director of policy for the California Pan-Ethnic Health Network. “There is much more work to do.”

Last year, Gov. Gavin Newsom appointed Bonta as attorney general after Xavier Becerra left the position to join the Biden administration as secretary of the U.S. Department of Health and Human Services. In the Nov. 8 election, which won him his first full term, Bonta faced Republican challenger Nathan Hochman, a former federal prosecutor who campaigned on prosecuting violent criminals and pulling the deadly synthetic opioid fentanyl off the streets. In contrast, Bonta advocated for gun control and decriminalizing lower-level drug offenses, and in January advised law enforcement officials not to prosecute women for murder when a fetus dies, even if their drug use contributed to the death.

In unofficial results, Bonta had about 59% of the statewide vote, compared with 41% for Hochman.

Bonta, formerly a state legislator representing the East Bay, will be eligible to run for a second full term, which could allow him to serve for nearly 10 years.

His wife, Democratic state Assembly member Mia Bonta, was among the public officials who discussed their abortion experiences after a leaked draft of a U.S. Supreme Court opinion that was published in May revealed the justices would likely repeal Roe v. Wade. After they did, the attorney general threatened legal action against local jurisdictions that tried to adopt abortion bans.

Bonta called health care a right for all Californians and said he wanted to help people of color and low-income communities get more access to doctors and treatments, as well as better care. “It’s something I’ve been actively working on as an elected official my entire career, and even before that,” said Bonta, whose father helped organize health clinics for Central Valley farmworkers.

But health equity remains an elusive goal, even as it has become a catchphrase among advocates, researchers, politicians, and health care executives. And as with most aspects of the state’s mammoth health care system, progress comes slowly.

The Newsom administration, for example, will require managed-care plans that sign new Medicaid contracts to hire a chief equity officer and pledge to reduce health disparities, including in pediatric and maternal care. The state’s Medicaid program, known as Medi-Cal, serves nearly 15 million people — most of whom are people of color. But those changes won’t come until 2024, at the earliest.

State lawmakers are also trying to minimize racial discrimination through legislation. In 2019, for example, they passed a law that mandates implicit bias training for health care providers serving pregnant women. Black women are three times as likely to die from having a baby as white women.

In recent years, researchers started warning that racial discrimination was baked into the diagnostic algorithms that doctors use to guide their treatment decisions. One model predicted a lower rate of success for vaginal births among Black and Hispanic women who previously had a cesarean delivery than among white women, but failed to take into account patients’ marital status and insurance type, both of which can affect the success rate of a vaginal birth. Another, used by urologists, assigned Black patients coming into emergency rooms with “flank pain” a lower likelihood of having kidney stones than non-Black patients — even though the software’s developers failed to explain why.

Some researchers likened such medical algorithms to risk assessment tools used in the criminal justice system, which can lead to higher bail amounts and longer prison sentences for Black defendants. “If the underlying data reflect racist social structures, then their use in predictive tools cements racism into practice and policy,” they wrote in the New England Journal of Medicine in 2020.

Bonta is seeking the hospital industry’s cooperation in his algorithm investigation by framing racial and ethnic disparities as injustices that require intervention. He said he believes that his inquiry is the first of its kind and that it falls under the California Department of Justice’s responsibility to protect civil rights and consumers. “We have a lot of depth,” he said of his 4,500-employee agency.

Coleman Baeza and other advocates for health care consumers said the attorney general should also monitor nonprofit hospital mergers to ensure that health care facilities don’t reduce beds in underserved communities and crack down on predatory medical lending, particularly in dental care.

“They violate existing consumer protections, and that falls squarely within the AG’s jurisdiction,” said Linda Nguy, a senior policy advocate for the Western Center on Law and Poverty.

Nguy urged Bonta to go after underperforming health plans when they fail to contract with enough providers so patients can get timely appointments, even though the California Department of Managed Health Care is the state’s main health insurance regulator.

“During covid, the health plans were essentially given a pause on reporting of their timely access. But that pause is over, and the plans have to meet these requirements,” Nguy said. “He can ask for that utilization data.”

Bonta remains circumspect on a particular issue related to race.

His office has been facilitating California’s reparations task force, which issued a nearly 500-page preliminary report this year that noted that Black Californians had shorter life expectancies and poorer health outcomes than other groups. In surveys of hospitals across the country, Black patients with heart disease “receive older, cheaper, and more conservative treatments” than white patients, the report said.

The task force could recommend cash compensation for Black Californians who can establish ties to enslaved ancestors, but Bonta hasn’t endorsed that plan. The final report is due in July.

“If we can move the needle, then we should,” Bonta said. “There are a whole set of different possible solutions, pathways to get there.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Mark Kreidler:

@MarkKreidler

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California

‘Separate and Unequal’: Critics Say Newsom’s Pricey Medicaid Reforms Leave Most Patients Behind

LOS ANGELES — It wasn’t exactly an emergency, but Michael Reed, a security guard who lives in Watts, had back pain and ran out of his blood pressure medication. Unsure where else to turn, he went to his local emergency room for a refill.

Around the same time, James Woodard, a homeless man, appeared for his third visit that week. He wasn’t in medical distress. Nurses said he was likely high on meth and just looking for a place to rest.

In an overflow tent outside, Edward Green, a restaurant cook, described hearing voices and needing medication for his bipolar disorder.

The three patients were among dozens who packed the emergency room at MLK Community Hospital, a bustling health care complex in South Los Angeles reincarnated from the old hospital known as “Killer King” for its horrific patient care. The new campus serves the 1.3 million residents of Willowbrook, Compton, Watts, and other neighborhoods — a heavily Black and Latino population that suffers disproportionately high rates of devastating chronic conditions like diabetes, liver disease, and high blood pressure.

Arguably, none of the three men should have gone, on this warm April afternoon, to the emergency room, a place intended to address severe and life-threatening cases — and where care is extremely expensive.

But patients and doctors say it is nearly impossible to find a timely medical appointment or receive adequate care in the impoverished community, where fast food is easy to come by and fresh fruits and vegetables are not. Liquor stores outnumber grocery stores, and homeless encampments are overflowing. A staggering 72% of patients who receive care at the hospital rely on Medi-Cal, the state’s Medicaid program for low-income people.

“For some people, the emergency room is a last resort. But for so many people who live here, it’s literally all there is,” said Dr. Oscar Casillas, who runs the department. “Most of what I see is preventable — preventable with normal access to health care. But we don’t have that here.”

The community is short 1,400 doctors, according to Dr. Elaine Batchlor, the hospital’s CEO, who said her facility is drowning under a surge of patients who are sicker than those in surrounding communities. For instance, the death rate from diabetes is 76% higher in the community than in Los Angeles County as a whole, 77% higher for high blood pressure — an early indicator of heart disease — and 50% higher for liver disease.

But dramatic changes are afoot that could herald improvements in care — or cement the stark health disparities that persist between rich and poor communities.

Dr. Oscar Casillas directs the emergency room at MLK Community Hospital in South Los Angeles. “Since we see a patient population that is overwhelmingly on Medi-Cal and socioeconomically disadvantaged, all of the problems in health care are magnified here,” he says.(Angela Hart / KHN)

Gov. Gavin Newsom is spearheading a massive experiment in Medi-Cal, pouring nearly $9 billion into a five-year initiative that targets the sickest and costliest patients and provides them with nonmedical benefits such as home-delivered meals, money for housing move-in costs, and home repairs to make living environments safer for people with asthma.

The concept — which is being tested in California on a larger scale than anywhere else in the country — is to improve patient health by funneling money into social programs and keeping patients out of costly institutions such as emergency departments, jails, nursing homes, and mental health crisis centers.

The initiative, known as CalAIM, sounds like an antidote to some of the ills that plague MLK. Yet only a sliver of its patients will receive the new and expensive benefits.

Just 108 patients — the hospital treats about 113,000 people annually — have enrolled since January. Statewide, health insurers have signed up more than 97,200 patients out of roughly 14.7 million Californians with Medi-Cal, according to state officials. And while a growing number of Medi-Cal enrollees are expected to receive the new benefits in the coming years, most will not.

Top state health officials argue that the broader Medi-Cal population will benefit from other components of CalAIM, which is a multipronged, multiyear effort to boost patients’ overall physical and mental health. But doctors, hospital leaders, and health insurance executives are skeptical that the program will fundamentally improve the quality of care for those not enrolled — including access to doctors, one of the biggest challenges for Medi-Cal patients in South Los Angeles.

“The state is now saying it will allow Medicaid dollars to be spent on things like housing and nutritious food — and those things are really important — but they’re still not willing to pay for medical care,” Batchlor said.

Batchlor has been lobbying the Newsom administration and state lawmakers to fix basic health care for the state’s poorest residents. She believes that increasing payments for doctors and hospitals that treat Medi-Cal patients could lead to improvements in both quality and access. The state and the 25 managed-care insurance plans it pays to provide health benefits to most Medi-Cal enrollees reimburse providers so little for care that it perpetuates “racism and discrimination,” she said.

Batchlor said the hospital gets about $150, on average, to treat a Medi-Cal patient in its emergency room. But it would receive about $650 if that patient had Medicare, she said, while a patient with commercial health insurance would trigger a payment of about $2,000.

The hospital brought in $344 million in revenue in 2020 and spent roughly $330 million on operations and patient care. It loses more than $30 million a year on the emergency room alone, Batchlor said.

Medicaid is generally the lowest payer in health care, and California is among the lowest-paying states in the country, experts say.

“The rates are not high enough for providers to practice. Go to Beverly Hills and those people are overdosing on health care, but here in Compton, patients are dying 10 years earlier because they can’t get health care,” Batchlor said. “That’s why I call it separate and unequal.”

South Los Angeles is experiencing a homelessness epidemic. Some people live in recreational vehicles that line the streets. Tent encampments are regularly razed by law enforcement.(Heidi de Marco / KHN)

Newsom in September vetoed a bill that would have boosted Medi-Cal payment rates for the hospital, saying the state can’t afford it. But Batchlor isn’t giving up. Nor are other hospitals, patient advocates, Medi-Cal health insurers, and the state’s influential doctors’ lobby, which are working to persuade Newsom and state lawmakers to pony up more money for Medi-Cal.

It’ll be a tough sell. Newsom’s top health officials defend California’s rates, saying the state has boosted pay for participating providers by offering bonus and incentive payments for improvements in health care quality and equity — even as the state adds Medi-Cal recipients to the system.

“We’ve been the most aggressive state in expanding Medi-Cal, especially with the addition of undocumented immigrants,” said Dustin Corcoran, CEO of the California Medical Association, which represents doctors and is spearheading a campaign to lobby officials. “But we have done nothing to address the patient access side to health care.”

***

The hospital previously known as Martin Luther King Jr./Drew Medical Center was forced to shut down in 2007 after a Los Angeles Times investigation revealed the county-run hospital’s “long history of harming, or even killing, those it was meant to serve.” In one well-publicized case, a homeless woman was writhing in pain and vomiting blood while janitors mopped around her. She later died.

MLK Community Hospital rose from its ashes in 2015 as a private, nonprofit safety-net hospital that runs largely on public insurance and philanthropy. Its state-of-the-art facilities include a center to treat people with diabetes and prevent their limbs from being amputated — and the hospital is trying to reach homeless patients with a new street medicine team.

Still, decades after the deadly 1965 Watts riots spurred construction of the original hospital — which was supposed to bring high-quality health care to poor neighborhoods in South Los Angeles — many disparities persist.

Less than a mile from the hospital, 60-year-old Sonny Hawthorne rattled through some trash cans on the sidewalk. He was raised in Watts and has been homeless for most of his adult life, other than stints in jail for burglary.

He hustles on his bike doing odd jobs for cash, such as cleaning yards and recycling, but said he has trouble filling out job applications because he can’t read. Most of his day is spent just surviving, searching for food and shelter.

Hawthorne is one of California’s estimated 173,800 homeless residents, most of whom are enrolled in Medi-Cal or qualify for the program. He has diabetes and high blood pressure. He had been on psychotropic medicine for depression and paranoia but hasn’t taken it in months or years. He can’t remember.

“They wanted me to come back in two weeks, but I didn’t go,” he said of an emergency room visit this year for chronic foot pain associated with diabetes. “It’s too much responsibility sometimes.”

Sonny Hawthorne has been homeless in Watts, California, for most of his adult life. He can’t read and has advanced diabetes and untreated mental health conditions. Without stable housing, he says, he can’t keep on top of his health problems. He’d likely qualify for new, nontraditional Medi-Cal services, but there aren’t enough resources to serve everyone in need.(Heidi de Marco / KHN)

Hawthorne’s chronic health conditions and homelessness should qualify him for the CalAIM initiative, which would give him access to a case manager to help him find a primary care doctor, address untreated medical conditions, and navigate the new social services that may be available to him under the program.

But it’s not up to him whether he receives the new benefits.

The state has yielded tremendous power to Medi-Cal’s managed-care insurance companies to decide which social services they will offer. They also decide which of their sickest and most vulnerable enrollees get them.

One benefit all plans must offer is intensive care management, in which certain patients are assigned to case managers who help them navigate their health and social service needs, get to appointments, take their medications regularly, and eat healthy foods.

Plans can also provide benefits from among 14 broad categories of social services, such as six months of free housing for some homeless patients discharged from the hospital, beds in sobering centers that allow patients to recover and get clean outside the emergency room, and assistance with daily tasks such as grocery shopping.

L.A. Care Health Plan, the largest Medi-Cal managed-care insurer in Los Angeles County, with more than 2.5 million enrollees, is contracting with the hospital, which will provide housing and case management services under the initiative. For now, the hospital is targeting patients who are homeless and repeat emergency room visitors, said Fernando Lopez Rico, who helps homeless patients get services.

So far, the hospital has referred 78 patients to case managers and enrolled 30 other patients in housing programs. Only one has been placed in permanent housing, and about 17 have received help getting temporary shelter.

“It is very difficult to place people,” Lopez Rico said. “There’s almost nothing available, and we get a lot of hesitancy and pushback from private property owners not wanting to let these individuals or families live there.”

(Heidi de Marco / KHN)

Patrick Alvarez, 57, has diabetes and was living in a shed without running water until July, when an infection in his feet grew so bad that he had several toes amputated.

The hospital sent him to a rehabilitation and recovery center, where he is learning to walk again, receiving counseling, and looking for permanent housing.

If he finds a place he can afford, CalAIM will pay his first month’s and last month’s rent, the security deposit, and perhaps even utility hookup fees.

But the hunt for housing, even with the help of new benefits, is arduous. A one-bedroom apartment he saw in September was going for $1,600 a month and required a deposit of $1,600. “It’s horrible, I can’t afford that,” he said.

Hawthorne needs help just as badly. But he’s unlikely to get it since he doesn’t have a phone or permanent address — and wouldn’t be easy for the hospital to find. The homeless encampments where he lives are routinely cleared by law enforcement officials.

“We have so many more people who need help than are able to get it,” Lopez Rico said. “There aren’t enough resources to help everyone, so only some people get in.”

***

L.A. Care has referred about 28,400 members to CalAIM case managers, roughly 1% of its total enrollees, according to its CEO, John Baackes. It is offering housing, food, and other social services to even fewer: about 12,600 people.

CalAIM has the potential to dramatically improve the health of patients who are lucky enough to receive new benefits, Baackes said. But he isn’t convinced it will save the health care system money and believes it will leave behind millions of other patients — without greater investment in the broader Medi-Cal program.

“Access is not as good for Medi-Cal patients as it is for people with means, and that is a fundamental problem that has not changed with CalAIM,” Baackes said.

Evidence shows that basic Medi-Cal patient care is often subpar.

Year-over-year analyses published by the state Department of Health Care Services, which administers Medi-Cal, have found that, by some measures, Medi-Cal health plans are getting worse at caring for patients, not better. Among the most recent findings: The rates of breast and cervical cancer screenings for women were worse in 2020 than 2019, even when the demands that covid-19 placed on the health care system were factored into the analysis. Hospital readmissions increased, and diabetes care declined.

“The impact of covid is real — providers shut down — but we also know we need a lot of improvement in access and quality,” said State Medicaid Director Jacey Cooper. “We don’t feel we are where we should be in California.”

Cooper said her agency is cracking down on Medi-Cal insurance plans that are failing to provide adequate care and is strengthening oversight and enforcement of insurers, which are required by state law to provide timely access to care and enough network doctors to serve all their members.

The state is also requiring participating health plans to sign new contracts with stricter quality-of-care measures.

Cooper argues CalAIM will improve the quality of care for all Medi-Cal patients, describing aspects of the initiative that require health plans to hook patients up with primary care doctors, connect them with specialty care, and develop detailed plans to keep them out of expensive treatment zones like the emergency room.

Michael Reed, who is in his mid-50s, ran out of his medication for high blood pressure in April and went to MLK Community Hospital for a refill. He explained he didn’t have a primary care doctor and didn’t know where else to turn. “This is a good hospital,” Reed says.(Angela Hart / KHN)

She denied that CalAIM will leave millions of Medi-Cal patients behind and said the state has increased incentive and bonus payments so health care providers will focus on improving care while implementing the initiative.

“CalAIM targets people who are homeless and extremely high-need, but we’re also focusing on wellness and prevention,” she told KHN. “It really is a wholesale reform of the entire Medicaid system in California.”

A chorus of doctors, hospital leaders, health insurance executives, and health care advocates point to Medi-Cal reimbursement rates as the core of the problem. “The chronic condition in Medi-Cal is underfunding,” said Linnea Koopmans, CEO of the Local Health Plans of California.

Although the state has restored some previous Medi-Cal rate cuts, there’s no move to increase base payments for doctors and hospitals. Cooper said the state is using tobacco tax dollars and other state money to attract more providers to the system and to entice doctors who already participate to accept more Medi-Cal patients.

When Newsom vetoed the bill to provide higher reimbursements primarily for emergency room care at MLK, he said the state cannot afford the “tens of millions” of dollars it would cost.

MLK leaders vow to continue pushing, while other hospitals and the powerful California Medical Association plot a larger campaign to draw attention to the low payment rates.

“Californians who rely on Medi-Cal — two-thirds of whom are people of color — have a harder time finding providers who are willing to care for them,” said Jan Emerson-Shea, a spokesperson for the California Hospital Association.

For Dr. Oscar Casillas at MLK, the issue is critical. Although he’s a highly trained emergency physician, most days he practices routine primary care, addressing fevers, chronic foot and back pain, and missed medications.

“If you put yourself in the shoes of our patients, what would you do?” asked Casillas, who previously worked as an ER doctor in the affluent coastal city of Santa Monica. “There’s no reasonable access if you’re on Medi-Cal. Most of the providers are by the beach, so emergency departments like ours are left holding the bag.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Angela Hart:
ahart@kff.org,
@ahartreports

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Disparities

Embedded Bias: How Medical Records Sow Discrimination

[UPDATED on Nov. 14]

David Confer, a bicyclist and an audio technician, told his doctor he “used to be Ph.D. level” during a 2019 appointment in Washington, D.C. Confer, then 50, was speaking figuratively: He was experiencing brain fog — a symptom of his liver problems. But did his doctor take him seriously? Now, after his death, Confer’s partner, Cate Cohen, doesn’t think so.

Confer, who was Black, had been diagnosed with non-Hodgkin lymphoma two years before. His prognosis was positive. But during chemotherapy, his symptoms — brain fog, vomiting, back pain — suggested trouble with his liver, and he was later diagnosed with cirrhosis. He died in 2020, unable to secure a transplant. Throughout, Cohen, now 45, felt her partner’s clinicians didn’t listen closely to him and had written him off.

That feeling crystallized once she read Confer’s records. The doctor described Confer’s fuzziness and then quoted his Ph.D. analogy. To Cohen, the language was dismissive, as if the doctor didn’t take Confer at his word. It reflected, she thought, a belief that he was likely to be noncompliant with his care — that he was a bad candidate for a liver transplant and would waste the donated organ.

For its part, MedStar Georgetown, where Confer received care, declined to comment on specific cases. But spokesperson Lisa Clough said the medical center considers a variety of factors for transplantation, including “compliance with medical therapy, health of both individuals, blood type, comorbidities, ability to care for themselves and be stable, and post-transplant social support system.” Not all potential recipients and donors meet those criteria, Clough said.

Doctors often send signals of their appraisals of patients’ personas. Researchers are increasingly finding that doctors can transmit prejudice under the guise of objective descriptions. Clinicians who later read those purportedly objective descriptions can be misled and deliver substandard care.

Discrimination in health care is “the secret, or silent, poison that taints interactions between providers and patients before, during, after the medical encounter,” said Dayna Bowen Matthew, dean of George Washington University’s law school and an expert in civil rights law and disparities in health care.

Bias can be seen in the way doctors speak during rounds. Some patients, Matthew said, are described simply by their conditions. Others are characterized by terms that communicate more about their social status or character than their health and what’s needed to address their symptoms. For example, a patient could be described as an “80-year-old nice Black gentleman.” Doctors mention that patients look well-dressed or that someone is a laborer or homeless.

The stereotypes that can find their way into patients’ records sometimes help determine the level of care patients receive. Are they spoken to as equals? Will they get the best, or merely the cheapest, treatment? Bias is “pervasive” and “causally related to inferior health outcomes, period,” Matthew said.

Narrow or prejudiced thinking is simple to write down and easy to copy and paste over and over. Descriptions such as “difficult” and “disruptive” can become hard to escape. Once so labeled, patients can experience “downstream effects,” said Dr. Hardeep Singh, an expert in misdiagnosis who works at the Michael E. DeBakey Veterans Affairs Medical Center in Houston. He estimates misdiagnosis affects 12 million patients a year.

Conveying bias can be as simple as a pair of quotation marks. One team of researchers found that Black patients, in particular, were quoted in their records more frequently than other patients when physicians were characterizing their symptoms or health issues. The quotation mark patterns detected by researchers could be a sign of disrespect, used to communicate irony or sarcasm to future clinical readers. Among the types of phrases the researchers spotlighted were colloquial language or statements made in Black or ethnic slang.

“Black patients may be subject to systematic bias in physicians’ perceptions of their credibility,” the authors of the paper wrote.

That’s just one study in an incoming tide focused on the variations in the language that clinicians use to describe patients of different races and genders. In many ways, the research is just catching up to what patients and doctors knew already, that discrimination can be conveyed and furthered by partial accounts.

Confer’s MedStar records, Cohen thought, were pockmarked with partial accounts — notes that included only a fraction of the full picture of his life and circumstances.

Cohen pointed to a write-up of a psychosocial evaluation, used to assess a patient’s readiness for a transplant. The evaluation stated that Confer drank a 12-pack of beer and perhaps as much as a pint of whiskey daily. But Confer had quit drinking after starting chemotherapy and had been only a social drinker before, Cohen said. It was “wildly inaccurate,” Cohen said.

“No matter what he did, that initial inaccurate description of the volume he consumed seemed to follow through his records,” she said.

Physicians frequently see a harsh tone in referrals from other programs, said Dr. John Fung, a transplant doctor at the University of Chicago who advised Cohen but didn’t review Confer’s records. “They kind of blame the patient for things that happen, not really giving credit for circumstances,” he said. But, he continued, those circumstances are important — looking beyond them, without bias, and at the patient himself or herself can result in successful transplants.

David Confer and Cate Cohen in summer 2016 visiting the Outer Banks of North Carolina. Throughout Confer’s battle with non-Hodgkin lymphoma, Cohen says, she felt her partner’s clinicians didn’t listen closely to him and had written him off. Confer died in 2020, unable to secure a liver transplant. (Cate Cohen)

The History of One’s Medical History

That doctors pass private judgments on their patients has been a source of nervous humor for years. In an episode of the sitcom “Seinfeld,” Elaine Benes discovers that a doctor had condescendingly written that she was “difficult” in her file. When she asked about it, the doctor promised to erase it. But it was written in pen.

The jokes reflect long-standing conflicts between patients and doctors. In the 1970s, campaigners pushed doctors to open up records to patients and to use less stereotyping language about the people they treated.

Nevertheless, doctors’ notes historically have had a “stilted vocabulary,” said Dr. Leonor Fernandez, an internist and researcher at Beth Israel Deaconess Medical Center in Boston. Patients are often described as “denying” facts about their health, she said, as if they’re not reliable narrators of their conditions.

One doubting doctor’s judgment can alter the course of care for years. When she visited her doctor for kidney stones early in her life, “he was very dismissive about it,” recalled Melina Oien, who now lives in Tacoma, Washington. Afterward, when she sought care in the military health care system, providers — whom Oien presumed had read her history — assumed that her complaints were psychosomatic and that she was seeking drugs.

“Every time I had an appointment in that system — there’s that tone, that feel. It creates that sense of dread,” she said. “You know the doctor has read the records and has formed an opinion of who you are, what you’re looking for.”

A decade and a half later, when Oien left military care in 2013, her paper records didn’t follow her. Nor did those assumptions.

New Technology — Same Biases?

While Oien could leave her problems behind, the health system’s shift to electronic medical records and the data-sharing it encourages can intensify misconceptions. It’s easier than ever to maintain stale records, rife with false impressions or misreads, and to share or duplicate them with the click of a button.

“This thing perpetuates,” Singh said. When his team reviewed records of misdiagnosed cases, he found them full of identical notes. “It gets copy-pasted without freshness of thinking,” he said.

Research has found that misdiagnosis disproportionately happens to patients whom doctors have labeled as “difficult” in their electronic health record. Singh cited a pair of studies that presented hypothetical scenarios to doctors.

In the first study, participants reviewed two sets of notes, one in which the patient was described simply by her symptoms and a second in which descriptions of disruptive or difficult behaviors had been added. Diagnostic accuracy dropped with the difficult patients.

The second study assessed treatment decisions and found that medical students and residents were less likely to prescribe pain medications to patients whose records included stigmatizing language.

Digital records can also display prejudice in handy formats. A 2016 paper in JAMA discussed a small example: an unnamed digital record system that affixed an airplane logo to some patients to indicate that they were, in medical parlance, “frequent flyers.” That’s a pejorative term for patients who need plenty of care or are looking for medications.

But even as tech might amplify these problems, it can also expose them. Digitized medical records are easily shared — and not merely with fellow doctors, but also with patients.

Since the ’90s, patients have had the right to request their records, and doctors’ offices can charge only reasonable fees to cover the cost of clerical work. Penalties against practices or hospitals that failed to produce records were rarely assessed — at least until the Trump administration, when Roger Severino, previously known as a socially conservative champion of religious freedom, took the helm of the U.S. Department of Health and Human Services’ Office for Civil Rights.

During Severino’s tenure, the office assessed a spate of monetary fines against some practices. The complaints mostly came from higher-income people, Severino said, citing his own difficulties getting medical records. “I can only imagine how much harder it often is for people with less means and education,” he said.

Patients can now read the notes — the doctors’ descriptions of their conditions and treatments — because of 2016 legislation. The bill nationalized policies that had started earlier in the decade, in Boston, because of an organization called OpenNotes.

For most patients, most of the time, opening record notes has been beneficial. “By and large, patients wanted to have access to the notes,” said Fernandez, who has helped study and roll out the program. “They felt more in control of their health care. They felt they understood things better.” Studies suggest that open notes lead to increased compliance, as patients say they’re more likely to take medicines.

Conflicts Ahead?

But there’s also a darker side to opening records: if patients find something they don’t like. Fernandez’s research, focusing on some early hospital adopters, has found that slightly more than 1 in 10 patients report being offended by what they find in their notes.

And the wave of computer-driven research focusing on patterns of language has similarly found low but significant numbers of discriminatory descriptions in notes. A study published in the journal Health Affairs found negative descriptors in nearly 1 in 10 records. Another team found stigmatizing language in 2.5% of records.

Patients can also compare what happened in a visit with what was recorded. They can see what was really on doctors’ minds.

Oien, who has become a patient advocate since moving on from the military health care system, recalled an incident in which a client fainted while getting a drug infusion — treatments for thin skin, low iron, esophageal tears, and gastrointestinal conditions — and needed to be taken to the emergency room. Afterward, the patient visited a cardiologist. The cardiologist, who hadn’t seen her previously, was “very verbally professional,” Oien said. But what he wrote in the note — a story based on her ER visit — was very different. “Ninety percent of the record was about her quote-unquote drug use,” Oien said, noting that it’s rare to see the connection between a false belief about a patient and the person’s future care.

Spotting those contradictions will become easier now. “People are going to say, ‘The doc said what?’” predicted Singh.

But many patients — even ones with wealth and social standing — may be reluctant to talk to their doctors about errors or bias. Fernandez, the OpenNotes pioneer, didn’t. After one visit, she saw a physical exam listed on her record when none had occurred.

“I did not raise that to that clinician. It’s really hard to raise things like that,” she said. “You’re afraid they won’t like you and won’t take good care of you anymore.”

[Correction: This article was updated at 11:30 a.m. ET on Nov. 14, 2022, to accurately reflect the time Melina Oien spent in the military health care system.]

Darius Tahir:
DariusT@kff.org,
@dariustahir

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