Then, Kim learned to go further. Through a training program, she gained the know-how and confidence to provide emotional support. She learned evidence-based mental health counseling skills such as asking open-ended questions. She also discovered that some things she was already doing, such as listening attentively and restating what she hears, are core to communicating empathy — a vital component of a successful relationship between a client and their mental health provider.

“It was very refreshing to see that it’s named and to realize those are skills,” she said.

Asian Health Services, where Kim works, is a part of a fledgling movement trying to address a dire shortage of therapists by training community health workers and other nonlicensed professionals who have trusted relationships with their communities to add mental health counseling to their roles. This approach, already implemented abroad and proven to help address some common mental health conditions, is called lay counseling.

The Oakland, California-based community health center serves mostly low-income Asian immigrants who speak limited English. As a community health worker, Kim now also practices lay counseling under a licensed therapist’s supervision. She does not have a license, but as a Korean immigrant and strong-arm robbery survivor, she shares lived experiences with many of the people she serves, enabling her to build trust.

Research suggests Asian Americans see mental health providers at lower rates than people of other races, and up to half of some subgroups report difficulty accessing mental health care. Figures like these may be only the tip of the iceberg, as Asian Americans can be reluctant even to seek help. Cultural stigma against mental illness and feeling like one’s problems pale in comparison to the trauma faced by earlier generations are among the reasons, said Connie Tan, senior research analyst at AAPI Data, a think tank.

Asian Health Services introduced lay counseling during the covid-19 pandemic. Violence against Asian Americans was spiking, and therapists fluent in any of the 14 languages spoken by the communities the health center cares for were in short supply. Six percent of people in the U.S. identify as Asian, Native Hawaiian, or Pacific Islander, but these groups account for only 3% of psychologists.

Concerned that people were falling through the cracks, the health center in 2021 launched a grant-funded initiative to support victims of violence. In addition to lay counseling and therapy by licensed providers, available in several languages, the program, known as the Community Healing Unit, provides services such as helping clients access crime victim funds.

The program has sent 43 community health workers, case managers, and other employees to a lay counseling training program, said Ben Wang, the health center’s director of special initiatives. Trainees learn through formal instruction, observing teachers providing counseling, and practicing counseling with one another, along with feedback from instructors.

Thu Nguyen, a domestic violence survivor, was struggling with anxiety and self-blame. “My inside talk eats me up,” she explained. Worried that sharing with family members would burden them, she was unsure where else to turn for support after meeting with a therapist she didn’t click with. Through the program, Nguyen was assigned to Kim, who connected her to a compatible therapist.

Nguyen also leaned on Kim for emotional support. When she confided feeling guilty and inadequate as a single mother, Kim responded without judgment and affirmed Nguyen’s dedication.

“She validates my feeling,” said Nguyen, a Vietnamese immigrant. “She would say, ‘I understand that it’s hard. You’re doing the best.’”

Asian Americans can struggle to find therapists who understand their culture, speak their language, or come from similar communities. Licensed therapists typically must complete an advanced degree, pass professional exams, and work at least two years under supervision. Requirements vary by state and by type of license. It has long been held that the process ensures high-quality care.

Lay counseling proponents contend this path is costly and time-consuming, limiting the field’s diversity and exacerbating the therapist shortage. They also point to favorable research. Lay counseling has been implemented in several countries, where mounting evidence has shown it can improve symptoms of depression, anxiety, and a few other mental health conditions.

“The idea that someone without a license could not [communicate empathy] skillfully is ridiculous,” said Elizabeth Morrison, a psychologist and co-founder of Lay Counselor Academy, which has trained 420 people, including Kim, to add lay counseling to their roles since launching two years ago. Trainees hail from a variety of jobs, including faith leaders and first responders.

The 65-hour primarily virtual course teaches topics such as supporting people who have experienced trauma, counseling methods such as cognitive behavioral therapy and motivational interviewing, first-line strategies for treating depression and anxiety, and setting boundaries. The course does not teach how to diagnose mental health conditions. Instead, trainees learn to affirm strengths, acknowledge feelings, avoid giving advice, and otherwise listen empathically.

Asian Health Services staff members who provide lay counseling receive ongoing support and guidance after the training from a program manager and a licensed therapist, Wang said.

Raquel Halfond, a senior director at the American Psychological Association, said she believes it’s important for lay counselors to receive training and to practice under the supervision of a licensed mental health professional, but the group has no formal model or standards for the use of lay counselors.

The course not only upskills but also recognizes what many trainees already do or have learned that may not be acknowledged as counseling. “It’s like this invisible, unpaid work, and people chalk it up as someone being nice,” Morrison said.

Lay counseling is still nascent, and it often takes years for a new field to become established — and for insurers to get on board. Morrison and Laura Bond, a research fellow at Harvard Medical School’s Mental Health For All Lab, another lay counseling training initiative, said they are not aware of any organizations that can bill public or private insurers for lay counseling.

In an email, Leah Myers, a spokesperson for the California Department of Health Care Services, which oversees Medi-Cal, the state’s Medicaid program, acknowledged there is no billing code for lay counseling or certification for lay counselors. She said Medi-Cal reimburses certain nonlicensed providers for services that “may include what would be considered ‘lay counseling’-like activities” but would need more details to make a determination.

The Community Healing Unit’s largest grant, from the state of California to support victims of hate crimes, ends in 2026. The program has served over 300 people and is developing a survey to gather feedback, Wang said.

Nguyen knew Kim wasn’t a licensed therapist but didn’t care, she said; she appreciated that Kim, a fellow Asian woman, made her feel safe to process her feelings. Kim was also easily accessible through biweekly check-ins, and responded promptly if Nguyen called at other times.

Now, Nguyen said, telling herself “you’re doing good” comes more easily.

Supplemental support comes from the Asian American Journalists Association-Los Angeles through The California Endowment.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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As a relative newcomer to Los Angeles, the recruiter, now 31, knew few Black people who could recommend doctors who had treated them with respect. She combed review sites, including Google reviews and Healthgrades, but couldn’t find how nearby physicians and hospitals might treat a Black woman like her.

“It’s hard to tell if it’s a fellow Black person who’s giving the review,” Caldwell said.

Consumer ratings sites rarely identify patient experiences by race or ethnicity and hospitals are under no obligation to reveal the racial and ethnic breakdowns of their patient satisfaction scores. Yet that information could be instrumental in holding maternity care providers and hospitals accountable for treating patients inequitably and could empower expectant mothers like Caldwell in finding quality obstetric care.

“You can’t change what you don’t see,” said Kimberly Seals Allers, founder of Irth, an app allowing Black and brown women to find and leave reviews of maternity care providers. She’s one of a few entrepreneurs developing new tools for collecting feedback from mothers of color.

A steady drip of new research over the past several years has spotlighted racial discrimination by maternity care providers and the role it may play in one of the country’s most vexing health disparities: Black women experience the worst birthing outcomes, a gap not explained by income or education, according to a KFF analysis. In 2021, they were nearly three times as likely to die of pregnancy-related causes as white women.

Mothers of color, especially Black women, report that they do in fact experience discrimination. They are more likely than white women to say that their care providers ignored them, scolded them, or pressured them into treatments they didn’t want. The extent to which discrimination is reported varies widely by survey, but one recently published report by the Centers for Disease Control and Prevention found roughly 30% of Black, Hispanic, and multiracial women reported mistreatment during maternity care, compared with 20% of women overall.

It’s unclear how many hospitals track survey responses by race, and, even if they do, they rarely reveal that information. And the federal government requires generic reporting on how patients say they were treated, making it difficult to pin down and address incidents of bias in maternity care.

Funding and Regulations Lag

Currently, the results of the industry’s standard patient experience survey, known as the Hospital Consumer Assessment of Healthcare Providers and Systems, are made publicly available by the federal government to help patients compare hospitals. They incentivize hospitals to improve care and are included in the rankings of many hospital ratings sites, such as U.S. News & World Report’s Best Hospitals. But it doesn’t ask about maternity care or discrimination and has low response rates, particularly among people of color.

These flaws can also make the survey inadequate for improving birth equity. “We know it’s insufficient,” said Amanda P. Williams, an OB-GYN and clinical innovation adviser to the nonprofit California Maternal Quality Care Collaborative. Hospitals, she said, could fill in the gaps by collecting feedback from maternity care surveys and breaking the results out by race and other demographic information; they could also talk to patients through forums such as town halls or focus groups.

Joy Lewis, senior vice president for health equity strategies at the American Hospital Association, said many hospitals do this work, both generally and in obstetrics.

However, Williams believes it isn’t happening enough in maternity care.

She said there are some pockets where people are doing these activities but that they are not yet widespread. At a national conference of 200 hospital executives this year, Williams said, only a few raised their hands when asked if they break out their maternity outcomes data. “If your overall C-section rate is fine, you might think everything’s hunky-dory,” she said. “But if you see that your Black people are having 50% higher C-section rates than your white and Asian patients, there’s very important work to be done.”

Then there are barriers to participation. Studies have found many in the Black community distrust the health care system.

Fearing retaliation and being seen as an “angry Black woman,” Ta-She-Ra Manning, a maternal health program coordinator in Fresno, California, said she didn’t provide any critical feedback when her OB-GYN dismissed her concerns about unusual symptoms during her 2021 pregnancy.

Meanwhile, new funding to measure disparities has been slow in coming. President Biden’s 2023 budget proposed $7.4 million to develop a supplemental survey aimed at reducing maternal health disparities, among other steps. But Congress did not fund the item. Instead, an agency in the Department of Health and Human Services is developing it with its own funding and estimates the work will take less than five years, according to a statement from Caren Ginsberg, who directs the agency’s surveys.

Still, the public likely won’t see changes anytime soon. After a survey’s measures are created, it can take several years for the results to be publicly reported or tied to payment, said Carol Sakala, senior director for maternal health at the National Partnership for Women & Families, an advocacy organization.

“This molasses level of movement contrasts acutely with all the things hitting the news about people not getting the right care and attention and respect,” Sakala said.

Amid growing interest in health equity, traditional ratings sites are grappling with how much to share with the public. For its birthing hospital ratings, U.S. News & World Report recently started assessing whether hospitals tracked racial disparities in maternity outcomes measures, but it withholds actual results. Healthgrades is taking time to think through how to collect and display sensitive information publicly, said spokesperson Sarah Javors in a statement.

Black Innovators Fight for Better Data

Some Black women are trying to fill the void by creating new feedback mechanisms that could be more trusted by the community. Allers said she created Irth after a traumatic birth experience as a Black mother at a highly rated hospital left her feeling failed by mainstream ratings. On the app, verified users answer questions, from whether they felt respected by their doctor to if they experienced certain types of mistreatment such as dismissal of pain. Irth currently has 10,000 reviews of hospitals, OB-GYNs, and pediatricians nationally, according to Allers.

“Our data is for the community,” said Allers. “They know their feedback has value to another mom or family.”

Irth also offers analysis of the reviews to hospitals and leads campaigns to collect more reviews for them. But Allers said many hospitals have expressed little interest.

Karen Scott, an OB-GYN who created PREM-OB, a scientifically validated survey that measures racism in Black birthing experiences, said she has met hospital leaders who don’t think their providers could mistreat patients or who worry that documenting responses could carry legal risk.

The American Hospital Association’s Lewis declined to comment specifically on Irth and PREM-OB but acknowledged the Black community’s long-standing mistrust of health care providers. She said hospitals want to hear more from patients in historically marginalized groups.

Early signs of progress are emerging in parts of the country.

California hospitals will likely report disparities in birth outcomes and patient satisfaction measures. Hospitals are expected to start posting data broken out by race and other demographics on their websites in 2026, though the state hasn’t finalized the measures that will be required, said Andrew DiLuccia, a spokesperson for the state’s health data agency. At least two states, Washington and New Jersey, have disclosed rates of C-sections among low-risk patients by race for individual hospitals.

Scott founded Birthing Cultural Rigor to increase uptake of her survey. The firm has partnered with birth equity groups to recruit respondents in select counties in Georgia, Michigan, Ohio, and Tennessee. Scott said results will be used to train local health professionals on how to reduce racism in maternity care.

Separately, Irth will collect and analyze reviews for three hospitals or health systems in California, said Allers. One of them, MemorialCare Miller Children’s and Women’s Hospital Long Beach, will work with Irth to better understand the impact of birth equity efforts such as implicit bias training.

“We’ll get to see if what we’re doing is actually working,” said Sharilyn Kelly, executive director of the hospital’s perinatal services.

Caldwell, the recruiter, eventually found a doctor she trusted and went on to have a smooth pregnancy and delivery. Her son is now 8 months old. But with so little information available on how she might be treated, she said, she felt anxious until she met her doctor, when “a lot of that stress and anxiety melted away.”

Digital strategy & audience engagement editor Chaseedaw Giles contributed to this report.

[Editor’s note: California Healthline is an editorially independent service of the California Health Care Foundation, which has contributed funding to PREM-OB and the birth equity nonprofit Narrative Nation, which developed Irth.]

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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April Valentine, a 31-year-old Black mother, died while giving birth in Inglewood, California, on Jan. 10. Her family has raised questions of improper care: Why didn’t nurses investigate numbness and swelling in her leg, symptoms she reported at least 10 times over the course of 15 hours? Why did it take nearly 20 hours for her doctor to see her after she arrived at the hospital already in labor?

Valentine’s family wants the state to investigate how she died and whether systemic or interpersonal racism could have played a role. Los Angeles politicians and media have amplified their demands. “I think she would have been treated differently if she was white,” said Valentine’s cousin Mykesha Mack, who filed a complaint.

The official cause of death was a blood clot that formed in her leg and traveled to her lung — a preventable condition. The state has issued a $75,000 fine to Centinela Hospital for risking the health and safety of Valentine, and an inspection report suggests it failed to properly assess her risk for blood clots, take precautions, and alert her physician. Centinela announced last month that it would close its maternity services on Oct. 25.

Even so, the odds of finding discrimination and getting justice remain stacked against her family.

The statuses of the state’s investigations aren’t clear, and a federal investigation is pending. The hospital and Valentine’s OB-GYN deny allegations of improper care and reject assertions by some family members that Valentine’s care team, which was largely Black, could have harbored bias toward her. But a KFF Health News analysis shows state authorities are ill-equipped to investigate discrimination complaints and often avoid fining hospitals that violate regulations. That highlights a big gap in the state’s ability to hold doctors and hospitals accountable when it comes to reducing bias in maternal care.

Aiming to reduce stark health disparities, in 2019, California became the first state to require implicit bias training for maternity care providers. But the state hasn’t penalized physicians and hospitals that treat patients inequitably, as it hasn’t found discrimination in the incidents brought to their attention. Neither of the agencies overseeing health care facilities and physicians — the California Department of Public Health and Medical Board of California — has found discrimination, despite hundreds of complaints going back a decade, the KFF Health News analysis found.

In the unlikely event that regulators find discrimination, they usually prefer corrective actions for violations, such as improvement plans, as opposed to penalties. Karen Smith, a physician who led the Department of Public Health from 2015 to 2019, said the agency wants hospitals to provide high-quality care, not to shut them down. So when one violates a regulation, the agency typically tries to help it remedy the problem, depending on the severity. The medical board has come under fire for avoiding meaningful penalties, even for grossly negligent doctors.

California’s rate of maternal deaths is among the lowest in the country, but is up to 3.6 times as high for Black women as for women of other races. Multiple factors, including systemic racism and provider bias, implicit or not, are thought to contribute to this disparity. Valentine’s is not the only high-profile death of a Black mother whose family said her care providers dismissed her.

Some advocates believe these cases keep happening because the state’s oversight of hospitals and doctors is too lax. “There’s no accountability,” said Linda Jones, a co-founder of Black Women Birthing Justice, a nonprofit organization seeking birth equity. “Why should they do anything different?”

A Mother’s Pleas Are Dismissed

Valentine, who worked with at-risk youth and styled hair on the side, was acutely aware of the risks Black mothers face, so she diligently attended prenatal visits and sought a birth doula and Black doctor, her family said.

Valentine’s sister Kesiah Cordova said she accompanied the first-time mother to a late-afternoon visit on Jan. 9 with her OB-GYN, Gwen Allen, who told them Valentine was dilated and that she would meet them at the hospital. Valentine went to Centinela Hospital Medical Center, owned by Prime Healthcare, one of the country’s largest for-profit health systems.

Cordova and Valentine’s partner, Nigha Robertson, were both with her throughout her stay. They said she got to the hospital around 8:30 p.m. While being admitted, Valentine was asked several questions by staff that made her feel uncomfortable, including if she knew who her baby’s father was and what type of housing her baby would live in, they said. Robertson said he doubts white mothers are asked these questions as often. Centinela responded in a statement that every patient is asked these questions to identify any nonmedical factors that could affect their health, so it can provide any necessary resources. Nurses then forbade her doula from attending her delivery, despite the hospital’s approval a month earlier, Robertson and Cordova added. The hospital said it welcomes doulas.

After receiving an epidural five hours later, Valentine reported leg numbness and, later, swelling, they said. Cordova and Robertson estimated that they witnessed Valentine ask nurses to examine her leg and call her doctor at least 10 times. Each time, they said, the nurses declined, saying her symptoms were normal.

“Every time they came to check on her, she would say, ‘Hey, can you look at my leg?’” said Cordova. “The nurse didn’t even lift up the blanket to check.”

Cordova and Robertson said nurses repeatedly told them they couldn’t call Valentine’s OB-GYN because she would get upset. They said Allen did not visit her until 4 p.m. the next day and did not address her concerns.

Two hours later, Cordova and Robertson said, Valentine coughed and vomited. A nurse told them this was normal. Then Valentine stopped breathing. Robertson and Cordova said the nurse in the room froze, so Robertson stepped in and gave Valentine CPR for about five minutes until additional staff, then Allen, arrived. They said her providers did not try to revive her before she was wheeled away. Centinela refuted these allegations but said it could not comment further.

Aniya was delivered via emergency cesarean section from her mother’s body.

No Track Record of Finding Discrimination

The state’s public health department and medical board would not comment on the details of Valentine’s case.

The California Department of Public Health is “deeply saddened” by what happened to Valentine and her family and takes “every action within its legal authority to safeguard patients,” including thoroughly investigating complaints, said spokesperson Ali Bay in a statement.

Asked how it evaluates the possibility of discrimination, the public health department sidestepped and said its role is to determine if any federal or state regulations were violated, and later added that hospitals must follow regulations that allow patients to exercise their rights without regard to race. It provided KFF Health News a copy of a letter dated Feb. 23 from Mark Ghaly, secretary of the California Health and Human Services Agency, to the Los Angeles County Board of Supervisors. Ghaly declined to be interviewed.

In the letter, he said the state would review medical records, interview medical staff, and assess the hospital’s policies and procedures in its investigation.

But the public health department’s track record shows it hasn’t substantiated a discrimination complaint yet. Statewide, the department has not found any violations of regulations protecting patients against discrimination since 2007, Bay said. She said the department found over 650 complaints that mention racism, discrimination, or both in all available records since 2007. It receives an average of around 45,000 total complaints and reported incidents across all facility types every year.

The medical board also hasn’t substantiated discrimination complaints against physicians. Since 2014, it has not found that a physician discriminated against a patient in any of the over 240 complaints it has closed, said Aaron Bone, the board’s chief of legislation and public affairs. He cautioned against drawing conclusions from a small sample; the agency received approximately 10,000 complaints of all types in 2020 alone.

Both agencies’ figures have limitations. The medical board tracks only discrimination resulting in a doctor’s refusal to treat. And neither agency knows exactly how many discrimination complaints were race-based.

The exact reasons for their limited track records are unclear, but some experts point to the high burden of proof for substantiating these cases.

Abbi Coursolle, a senior attorney at the National Health Law Program, said anti-discrimination laws and regulations can be hard to enforce. They are intended to protect people from intentional discrimination and policies or actions that disproportionately harm them. But people can unconsciously harbor biases, or there could be alternative explanations for ignoring a patient, such as a provider being busy, which can make discrimination hard to substantiate.

Racism “is complicated and hard to isolate, but the law hasn’t quite caught up to that,” she said.

State agencies, she added, can interpret the law so narrowly that people can’t take advantage of these protections.

The California agencies said they do their best within their legal authority. The medical board blamed current law, which, it said, requires “clear and convincing evidence” to discipline a physician, and it can be challenging to substantiate cases if the allegations aren’t documented or aren’t corroborated by witnesses. There may not always be sufficient evidence to find a violation, said Bay, of the public health department.

Smith, the former public health department director, said discrimination by a facility is typically hard to find unless investigators identify a pattern, but that type of research can be labor-intensive and hampered by underreporting of complaints.

So far, the public health department has imposed a $75,000 fine for risking Valentine’s health and safety. In his letter, Ghaly said the state could revoke or suspend the hospital’s license if it finds Centinela violated state or federal regulations. It could also refer the case to other agencies. The federal Department of Health and Human Services’ Office for Civil Rights acknowledged it is investigating Valentine’s case but declined to comment.

Centinela’s fine is the exception, not the rule. Last year, roughly 100 fines were levied against hospitals statewide out of nearly 12,000 complaints and incidents closed, according to a state database. The department cautioned that the data contains many redundant complaints and noted that not all violations require issuing fines. It declined to provide aggregated data on corrective actions, such as improvement plans, and nonfinancial penalties, such as license suspensions.

Evidence is mixed on whether financial penalties improve hospital care, illustrating how regulators’ hands may be tied.

‘Thoughts and Prayers’

The state public health department conducted an inspection of Centinela in February. It found the hospital failed to properly assess an unnamed labor and delivery patient’s risk for clotting and failed to notify her physician when she reported “leg heaviness” and when her vital signs were abnormal. Though the inspection, first reported by the Los Angeles Times, does not name Valentine, it describes the account her partner and family shared, including the date she was admitted to the hospital.

In its report, the department deemed the situation “immediate jeopardy,” meaning the hospital’s failure to meet requirements caused or could have caused death or serious injury. But regulators removed that label after the hospital submitted an improvement plan. Among other measures, it promised to reeducate nurses on how to prevent blood clots.

The report found Centinela made similar missteps with other patients, potentially increasing their risk for developing blood clots in deep veins, typically in the leg, which, when untreated, can travel to the lungs. Known as a pulmonary embolism, this condition is one of the most common causes of pregnancy-related deaths in the United States, and is preventable and treatable if discovered early, according to the Centers for Disease Control and Prevention. It was also the official cause of Valentine’s death, stated the Los Angeles County medical examiner’s website.

Centinela said it immediately addressed the inspection’s findings. Sue Lowe, a Centinela spokesperson, said it was the hospital, not the state, that decided to close its maternity and newborn units, “to create capacity for services of greatest benefit and need for patients.”

Robertson, Valentine’s partner, said he felt the report validated his account.

“They killed her,” said Robertson, who has retained an attorney. For him, justice would mean a punishment severe enough to ensure Valentine’s situation never happens again, but he wants Centinela to remain in business since it’s the only hospital in Inglewood.

Lowe said the hospital could not discuss specifics due to patient privacy laws but extended the hospital’s “thoughts and prayers” to Valentine’s family. She added, “We express our deepest condolences.”

Before the results of the state’s inspection report and the county’s autopsy report were publicized, Centinela implied the death was unpreventable. “Despite the highest standards of care,” said Lowe, “there are certain medically complex and emergent situations that cannot be overcome.” Centinela declined to comment on the autopsy results.

Lowe defended the hospital’s track record, noting it has won national awards for quality and patient safety. She said it had gone a decade without a maternal death in labor and delivery before Valentine’s. She also said the unit was appropriately staffed.

In 2020, the hospital registered 1.8 times the number of complaints and incidents as the state average. So far this year, it’s 9.5 times as many. Lowe responded that the state hasn’t substantiated many of these and that, in some recent years, the hospital had fewer total violations than the state average for hospitals of its size.

The hospital, Lowe said, maintains “robust policies prohibiting discrimination” and requires diversity and implicit bias training for staff. “Our staff reflects the community that we serve,” she added.

Allen, the OB-GYN, directed questions to her attorney, Ludlow B. Creary II, who said his client could not comment on the case, citing patient privacy protections. But he urged against drawing conclusions without both sides of the story and a medical expert’s assessment of whether Allen caused Valentine’s death. Allen, like the community she has served for 20 years, is Black, he added.

Doctors Oppose More Oversight

Mack, Valentine’s cousin, said Valentine’s providers being largely Black did not sway her view that they could have discriminated against her. She said she hopes the state evaluates whether interpersonal or systemic racism, or both, contributed to Valentine’s death. Did her clinicians dismiss her complaints due to bias, and did the hospital, located in a minority neighborhood, provide lower-quality care?

Both types of racism can be hard to see. The numbers, however, show they exist. Studies suggest Black mothers are more likely than white ones to report being ignored or mistreated by clinicians and to deliver at hospitals with lower-quality care.

The public health department considers how discrimination and systemic racism could have contributed to a maternal death in a quality improvement process known as the California Pregnancy-Associated Mortality Review. But this committee lacks authority to discipline hospitals or clinicians.

Attempts to reform laws often face resistance. Last year, the medical board asked the state to lower the burden of proof for disciplining physicians from “clear and convincing” to a standard equivalent to “more likely than not,” followed by most states. A bill including this request recently passed the California State Senate and is pending in the Assembly.

The California Medical Association, which represents physicians, opposes the bill, unless amended. “Clear and convincing” is the standard for disciplining professional license-holders in California, spokesperson Shannan Velayas said.

In Inglewood, a world away from bureaucrats and lobbyists, Robertson grieves and struggles as a single father. His job in crime scene and disaster cleanup can require long and unpredictable hours. He was recently called in to work at 2 in the morning, leaving him scrambling to get ahold of Aniya’s godmother to come watch her.

“It’s overwhelming, just all this juggling,” he said.

In periods of calm, father and daughter bond over picture books Valentine bought and go to the park with their dog. Robertson said Aniya, now over 6 months old and sitting up, is deeply loved.

Still, there’s a void that will only grow as Aniya gets older. He can’t style her hair the way Valentine would have and worries that he won’t be able to support her as a mother would when Aniya becomes a young woman.

“I don’t want nobody else to have to go through this hurt and pain,” Robertson said.

When told the state rarely finds discrimination, he paused, recognizing a gap in accountability. He said, “The government pick and choose which situations that they press the issue on.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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In September, American Medical Response, the largest U.S. provider of ambulance services, announced it had “made the difficult decision” to end nonemergency transports in Los Angeles County and blamed the state for having one of the lowest Medicaid reimbursement rates in the country. “What’s more,” the company, which sold for $2.4 billion in 2017 to private equity firm KKR, said, “we are not subsidized by taxpayer funds like public agencies, and almost 80% of our patients pay nothing or below cost for our services.”

The company, which also cited high operational costs, said its nonemergency division in that area was on track to lose $3.5 million in 2022.

The California Department of Health Care Services, which administers the state’s Medicaid program for low-income people, known as Medi-Cal, did not contest that the base rate hasn’t increased since 1999, but said that reimbursements have increased through add-on payments for supplemental costs and emergency rides.

In its initial announcement, AMR mentioned the phaseout of nonemergency services only in L.A. County. However, the company told KHN that it would stop servicing five hospitals in Orange County in addition to seven hospitals in L.A. County.

Jason Sorrick, vice president of government affairs at KKR-owned Global Medical Response, which is now AMR’s parent company, said AMR would exit over the next six months and shift vehicles and as many of the 170 crew members as possible to its core emergency services.

AMR’s pullout equates to a loss of 28,000 nonemergency transports a year and could create a predicament for the hospitals that contracted with the company. L.A. County said it does not track the total number of nonemergency rides provided by ambulances in the county, while Orange County wasn’t immediately able to share its figure.

Although ambulances are typically associated with 911 calls, many are used to transport frail or vulnerable patients between health care facilities. A patient may need to go to a rehabilitation facility after hip surgery, or someone who attempted suicide may need to be moved from an emergency room to a psychiatric facility. Such transfers, known as interfacility transports, enable hospitals to free up beds and maintain patient access.

There isn’t consensus on what the impact of AMR’s pullout will be. The state told KHN that it will review and address access issues on a “targeted basis” if it becomes aware of any. Patient advocates said it’s too early to draw conclusions about the effect on patients, particularly those covered by Medi-Cal. The California Ambulance Association flagged concerns that companies are already stretched thin by staffing and vehicle shortages.

Though the two counties and the insurers that serve their Medi-Cal populations did not express immediate concern about AMR’s decision, some hospitals may have trouble dealing with the loss.

“Halting these services will undoubtedly impact hospitals’ ability to efficiently manage” the flow of patients from arrival to discharge, said Adam Blackstone, senior vice president of communications for the Hospital Association of Southern California.

AMR said its pullout will primarily affect Providence, a Catholic health system operating in several states, including California. It did not respond to a request for comment.

AMR now also attributes its exit to avoiding a labor dispute. Sorrick said that because of Medi-Cal’s rates, AMR could not staff both emergency and nonemergency ambulances and raise wages for unionized emergency staffers who were threatening to strike. So it shuttered its lower-priority nonemergency division, which wasn’t unionized. It planned to use the savings to increase wages for emergency staff members.

Michael Diaz, an EMT and president of the International Association of EMTs and Paramedics Local 77, which represents 350 EMTs and paramedics for AMR emergency services in L.A. County, confirmed that AMR’s announcement came the day before the union planned to march in protest for higher wages.

Diaz, whose national union had joined the industry in lobbying the California legislature for higher rates, said AMR’s announcement could also have been politically motivated. “They’re sending a message,” he said.

So far, it’s unclear whether elected officials have noticed the pullout. Leaders of legislative budget committees declined to comment or did not respond to inquiries.

Medi-Cal spending on all medical transportation services totaled about $975 million in fiscal year 2021-22, according to data from the Department of Health Care Services.

The department said Medi-Cal’s insurers are ultimately responsible for maintaining an adequate network of medical transportation providers and noted that the insurers are allowed to pay above the base rate. The ambulance industry said it’s uncommon for insurers to pay more.

Jimmy Pierson, president of the California Ambulance Association, said other ambulance companies usually pick up the slack when one exits a market. But he warned that competitors may not be able to cover all of AMR’s nonemergency ambulance rides this time, given unprecedented labor and supply shortages — including two-year waits for new ambulances — and rising Medi-Cal enrollment and inflation. A recent national survey found that EMTs turned over at an annual rate of 36%.

“How are you going to find 170 employees in a labor shortage?” Pierson asked. “How will you find those ambulances?”

Ambulance companies said that hiring and retention have been battered by low wages, burnout, and lasting effects of EMT school closures during the pandemic — and that low Medi-Cal reimbursements make paying EMTs competitive salaries difficult.

A few other companies in the state have already shut down or scaled back services, Pierson added. In 2016, AMR ended nonemergency and emergency services in Tulare County, a region in the Central Valley with one of the highest shares of residents on Medi-Cal.

Sorrick said AMR believes enough companies provide nonemergency transports to absorb the volume.

Chad Druten, president of the Los Angeles County Ambulance Association, said the county has approximately 1,200 licensed private ambulances operated by about 35 companies, most of which are small to medium-sized and focus on nonemergency transports. A few large companies, including AMR, cover emergency calls.

Melissa Harris, who owns AmbuServe Ambulance Service in L.A. County, said she plans to compete for small portions of AMR’s contracts, focusing on the ones with fewer Medi-Cal patients. Harris said she loses money on every Medi-Cal-covered transport and can’t easily buy and staff new ambulances. If she wins any contracts, she will likely have to “trade” away her existing contracts that serve the highest portions of Medi-Cal patients.

The consequences of that, Harris said, would hit underserved patients the hardest.

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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En abril de 2020, su padre, un jardinero jubilado, murió de insuficiencia cardíaca y pulmonar. González hizo el duelo solo. Su trabajo como médico en formación le exponía a un alto riesgo de contraer el virus, y no quería contagiar a su familia. El estrés económico también se apoderó de él al tener que hacer frente a los elevados costos del entierro.

Ahora, González reclama una mejor remuneración y prestaciones para los residentes que trabajan horarios agotadores en los hospitales públicos del condado de Los Angeles por lo que, según él, reciben menos de $18 la hora, mientras atienden a los pacientes más vulnerables del condado.

“Se están aprovechando de nuestro altruismo”, dijo González. Ahora es jefe de residentes de medicina familiar en Harbor-UCLA y presidente del Comité de Internos y Residentes (CIR), un sindicato nacional que representa a los médicos en prácticas y que forma parte del Sindicato Internacional de Empleados de Servicios (SEIU).

“Necesitamos que se reconozcan los sacrificios que hemos hecho”, señaló.

Los residentes son médicos recién recibidos, que han terminado la carrera de medicina, y deben pasar de tres a siete años de formación en hospitales universitarios antes de poder ejercer de forma independiente.

Bajo la supervisión de un médico profesor, los residentes examinan, diagnostican y tratan a los pacientes. Algunos buscan formación adicional en especialidades médicas como “fellows” (práctica de especialización).

Estos médicos en formación se están agrupando en California, y otros estados, para exigir mayores salarios y mejores beneficios y condiciones de trabajo, luego de la enorme presión vivida durante la pandemia.

Así, se suman a enfermeras y enfermeros, auxiliares de enfermería y otros trabajadores de salud que se están sindicalizando y amenazan con ir a la huelga, ya que la escasez de personal, el aumento del costo de la vida y la falta de uniformidad en el suministro de equipos de protección personal y vacunas contra covid les han llevado al límite.

Más de 1,300 residentes sindicalizados y otros médicos en formación de tres hospitales públicos del condado de Los Angeles, incluido el Harbor-UCLA, votarán el 30 de mayo si se declaran en huelga para pedir un aumento de salarios y de gastos de alojamiento, tras un mes de bloqueo de las negociaciones con el condado.

Desde marzo, los residentes de Stanford Health Care, la Facultad de Medicina Keck de la Universidad del Sur de California y el Centro Médico de la Universidad de Vermont se han sindicado.

“Los residentes siempre han trabajado horarios de locos, pero el estrés de la pandemia les afectó mucho”, explicó John August, director de la Facultad de Relaciones Industriales y Laborales de la Universidad de Cornell.

La Asociación de Escuelas de Medicina de Estados Unidos, un grupo que representa a los hospitales universitarios y a las facultades de medicina, no abordó directamente la tendencia a la sindicalización de los residentes, pero la jefa de atención sanitaria de la organización, la doctora Janis Orlowski, comunicó a través de un vocero que una residencia es un aprendizaje laboral, y que la función principal de un residente es formarse.

Los residentes cobran como aprendices mientras estudian, se forman y trabajan, dijo Orlowski, y la asociación trabaja para garantizar que reciban una formación y un apoyo eficaces.

David Simon, vocero de la Asociación de Hospitales de California, no quiso hacer comentarios. Pero remitió a un estudio publicado en JAMA Network Open, en septiembre, en el que se mostraba que los residentes de cirugía en programas sindicados no reportaban menores tasas de agotamiento que los de los programas no sindicados.

Según el sindicato nacional, hasta el momento ningún nuevo grupo sindical ha alcanzado ningún acuerdo. Pero algunos de los más antiguos han conseguido mejoras en los salarios, las prestaciones y las condiciones de trabajo. El año pasado, un sindicato de residentes de la Universidad de California-Davis consiguió subvenciones para la vivienda y permisos parentales pagos.

Con más de 20,000 miembros, el CIR/SEIU representa a uno de cada siete médicos en formación en Estados Unidos. Su directora ejecutiva, Susan Naranjo, dijo que antes de la pandemia se organizaba un nuevo grupo sindical cada año, y que en el último año y medio se han unido ocho.

Las condiciones de trabajo de los residentes ya habían sido objeto de escrutinio mucho antes de la pandemia.

El salario medio de los residentes en Estados Unidos en 2021 era de $64,000, según MedScape, un sitio web de noticias para médicos, y los residentes pueden trabajar hasta 24 horas en un turno, pero no más de 80 horas a la semana.

Aunque una encuesta cuyos resultados se publicaron el año pasado encontró que el 43% de los residentes se sentían compensados adecuadamente, los que se están sindicalizando dicen que los salarios son demasiado bajos, especialmente teniendo en cuenta la carga de trabajo de los residentes, su deuda de préstamos estudiantiles y el aumento del costo de vida.

La tasa salarial afecta de manera desproporcionada a los residentes de comunidades de bajos ingresos y de color, afirmó González, porque tienen menos ayuda financiera de la familia para subvencionar su educación médica y para pagar otros gastos.

Sin embargo, al tener poco control sobre el lugar en el que se forman —a los graduados de escuelas de medicina se les asigna su residencia mediante un algoritmo—, individualmente, los residentes tienen un poder de negociación limitado con los hospitales.

Para los residentes sindicalizados que buscan ser escuchados, los aumentos salariales y los beneficios, como los estipendios de vivienda, son a menudo la prioridad, dijo Naranjo.

Los pacientes merecen médicos que no estén agotados y preocupados por el estrés financiero, dijo la doctora Shreya Amin, “fellow” de endocrinología en el Centro Médico de la Universidad de Vermont. A Amin le sorprendió que la institución se negara a reconocer al sindicato de residentes, teniendo en cuenta los sacrificios personales que hicieron durante la pandemia.

Si un hospital no reconoce voluntariamente a un sindicato, el CIR puede solicitar que la Junta Nacional de Relaciones Laborales administre una elección. El sindicato nacional lo hizo en abril, y con una mayoría de votos certificada, la sección de Vermont puede ahora comenzar la negociación colectiva, señaló Naranjo.

Annie Mackin, vocera del centro médico, declaró en un correo electrónico que está orgullosa de sus residentes por haber prestado una atención excepcional durante la pandemia y respeta su decisión de afiliarse a un sindicato. Mackin no quiso referirse a las preocupaciones de los residentes sobre las condiciones de trabajo.

La doctora Candice Chen, profesora de políticas de salud en la Universidad George Washington, cree que los Centros de Servicios de Medicare y Medicaid (CMS) también tienen cierta responsabilidad en las condiciones de trabajo de los residentes. Dado que la agencia paga a los hospitales universitarios para que formen a los residentes, debería responsabilizar a los centros de cómo los tratan, dijo.

Y el Consejo de Acreditación para la Educación Médica de Postgrado, que establece las normas laborales y educativas para los programas de residencia, se está moviendo en la dirección correcta con nuevos requisitos como la licencia familiar pagada, agregó, pero necesita hacer más.

Está por verse hasta dónde llegarán estos sindicatos para conseguir sus objetivos.

Las huelgas son poco frecuentes entre los médicos. La última huelga del CIR fue en 1990, la realizaron residentes en Nueva York.

Naranjo aseguró que una huelga sería el último recurso para sus miembros en el condado de Los Angeles, pero culpó al condado de retrasar y cancelar continuamente las sesiones de negociación. Entre sus demandas, el sindicato pide que el condado iguale el aumento salarial concedido a los miembros del SEIU 721, un sindicato que representa a otros empleados del condado, y que se conceda un subsidio de vivienda de $10,000.

Las encuestas realizadas a los miembros del sindicato han revelado que la mayoría de los médicos residentes del condado de Los Angeles dicen trabajar 80 horas a la semana, según Naranjo.

Una vocera del Departamento de Servicios de Salud del condado de Los Angeles, Coral Itzcalli, agradeció a su “heroica” fuerza de trabajo de primera línea por proporcionar “la mejor atención de su clase” y reconoció la importante carga que la pandemia ha supuesto para sus vidas personales y profesionales. Dijo que el Consejo de Acreditación para la Educación Médica de Postgrado establece los límites de horas y que la mayoría de los médicos en formación dicen trabajar “significativamente menos” de 80 horas a la semana.

Jesús Ruiz, vocero de la Oficina Ejecutiva del condado de Los Angeles, que gestiona las negociaciones laborales, indicó por correo electrónico que el condado espera llegar a un “contrato justo y fiscalmente responsable” con el sindicato.

Se espera que los resultados de la votación sobre la huelga se anuncien el 31 de mayo, según comunicó el sindicato.

Esta historia fue producida por KHN, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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In the early weeks of the pandemic, Dr. Lorenzo González, then a second-year resident of family medicine at Harbor-UCLA Medical Center, ran on fumes, working as many as 80 hours a week in the ICU. He was constantly petrified that he would catch the covid-19 virus and guilt-ridden for not having enough time to help his ailing father.

In April 2020, his father, a retired landscaper, died of heart and lung failure. González mourned alone. His job as a doctor-in-training put him at high risk of catching the virus, and he didn’t want to inadvertently spread it to his family. Financial stress also set in as he confronted steep burial costs.

Now, González is calling for better pay and benefits for residents who work grueling schedules at Los Angeles County’s public hospitals for what he said amounts to less than $18 an hour — while caring for the county’s most vulnerable patients.

“They’re preying on our altruism,” González said of the hospitals. He is now chief resident of family medicine at Harbor-UCLA and president of the Committee of Interns and Residents, a national union that represents physician trainees and that is part of the Service Employees International Union.

“We need acknowledgment of the sacrifices we’ve made,” he said.

Residents are newly minted physicians who have finished medical school and must spend three to seven years training at established teaching hospitals before they can practice independently. Under the supervision of a teaching physician, residents examine, diagnose, and treat patients. Some seek additional training in medical specialties as “fellows.”

These trainees are banding together in California and other states to demand higher wages and better benefits and working conditions amid intensifying burnout during the pandemic. They join nurses, nursing assistants, and other health care workers who are unionizing and threatening to strike as staffing shortages, the rising cost of living, and inconsistent supplies of personal protective equipment and covid vaccines have pushed them to the brink.

More than 1,300 unionized residents and other trainees at three L.A. County public hospitals, including Harbor-UCLA, will vote May 30 on whether to strike for a bump in their salaries and housing stipends, after a months-long negotiation deadlock with the county. Since March, residents at Stanford Health Care, Keck School of Medicine at the University of Southern California, and the University of Vermont Medical Center have unionized.

“Residents were always working crazy hours, then the stress of the pandemic hit them really hard,” said John August, a director at Cornell University’s School of Industrial and Labor Relations.

The Association of American Medical Colleges, a group that represents teaching hospitals and medical schools, did not address the unionization trend among residents directly, but the organization’s chief health care officer, Dr. Janis Orlowski, said through a spokesperson that a residency is a working apprenticeship and that a resident’s primary role is to be trained.

Residents are paid as trainees while they are studying, training, and working, Orlowski said, and the association works to ensure that they receive effective training and support.

David Simon, a spokesperson for the California Hospital Association, declined to comment. But he forwarded a study published in JAMA Network Open in September showing that surgery residents in unionized programs did not report lower rates of burnout than those in nonunionized programs.

So far, none of the new chapters have negotiated their first contracts, the national union said. But some of the longer-standing ones have won improvements in pay, benefits, and working conditions. Last year, a resident union at the University of California-Davis secured housing subsidies and paid parental leave through its first contract.

With more than 20,000 members, CIR represents about 1 in 7 physician trainees in the U.S. Executive Director Susan Naranjo said that before the pandemic one new chapter organized each year and that eight have joined in the past year and a half.

Residents’ working conditions had come under scrutiny long before the pandemic.

The average resident salary in the U.S. in 2021 was $64,000, according to Medscape, a physician news site, and residents can work up to 24 hours in a shift but no more than 80 hours per week. Although one survey whose results were released last year found that 43% of residents felt they were adequately compensated, those who are unionizing say wages are too low, especially given residents’ workload, their student loan debt, and the rising cost of living.

The pay rate disproportionately affects residents from low-income communities and communities of color, González said, because they have less financial assistance from family to subsidize their medical education and to pay for other costs.

But with little control over where they train — medical school graduates are matched to their residency by an algorithm — individual residents have limited negotiating power with hospitals.

For unionizing residents seeking a seat at the table, wage increases and benefits like housing stipends are often at the top of their lists, Naranjo said.

Patients deserve doctors who aren’t exhausted and preoccupied by financial stress, said Dr. Shreya Amin, an endocrinology fellow at the University of Vermont Medical Center. She was surprised when the institution declined to recognize the residents’ union, she said, considering the personal sacrifices they had made to provide care during the pandemic.

If a hospital does not voluntarily recognize a union, CIR can request that the National Labor Relations Board administer an election. The national union did so in April, and with a certified majority vote, the Vermont chapter can now begin collective bargaining, Naranjo said.

Annie Mackin, a spokesperson for the medical center, said in an email that it is proud of its residents for delivering exceptional care throughout the pandemic and respects their decision to join a union. Mackin declined to address residents’ workplace concerns.

Dr. Candice Chen, an associate professor of health policy at George Washington University, believes that the federal Centers for Medicare & Medicaid Services also bears some responsibility for residents’ working conditions. Because the agency pays teaching hospitals to train residents, it should hold the facilities accountable for how they treat them, she said. And the Accreditation Council for Graduate Medical Education, which sets work and educational standards for residency programs, is moving in the right direction with new requirements like paid family leave, she added, but needs to do more.

How far these unions will go to achieve their goals is an open question.

Strikes are rare among doctors. The last CIR strike was in 1990 by residents in New York.

Naranjo said a strike would be the last resort for its L.A. County members but blamed the county for continuously delaying and canceling bargaining sessions. Among its demands, the union is calling for the county to match the wage increase granted to members of SEIU 721, a union that represents other county employees, and for a $10,000 housing allowance.

The union’s member surveys have found that most L.A. County residents report working 80 hours a week, Naranjo said.

A spokesperson for L.A. County’s Department of Health Services, Coral Itzcalli, thanked its “heroic” front-line workforce for providing “best-in-class care” and acknowledged the significant toll that the pandemic has taken on their personal and professional lives. She said limits on hours are set by the Accreditation Council for Graduate Medical Education and that most trainees report working “significantly less” than 80 hours a week.

Jesus Ruiz, a spokesperson for the L.A. County Chief Executive Office, which manages labor negotiations for the county, said via email that the county hopes to reach a “fair and fiscally responsible contract” with the union.

Results of the strike vote are expected to be announced May 31, the union said.

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Since 2014, health systems around the country have partnered with Apple to tap into the mountains of data the company’s devices generate from patients. But most are still experimenting with these tools. While some doctors appreciate seeing records of home-monitored blood pressure, exercise and the like between visits, for others the data is more of a burden than an asset.

Over 100 types of data are available in Apple’s health app through iPhone, Apple Watch and third-party apps. In June, Apple said patients whose doctors work with one of the six electronic medical record companies participating in the new feature will be able to send them tracked data like heart rate, sleep hours, exercise minutes, steps, falls or menstrual cycle history.

Some see great promise in building “pipes” between a patient’s phone and the health records viewed by their clinicians. Apple is “democratizing the flow of health data” between doctors and patients, said Anil Sethi, a former Apple health director and current CEO of Ciitizen, a startup that manages health data for cancer patients.

But Apple’s announcement was shrouded in ambiguity and short on particulars. The company would not provide a complete list of the data patients can share with doctors and declined to comment for this article. Previous Apple moves to get more data into the hands of doctors have been announced with great fanfare, but questions remain as to how many health care providers are using the data and to what effect, and whether success stories are the norm or outliers. To date, rigorous studies showing clear health benefits from monitoring these types of data remain limited.

Although Apple has built pipes enabling patients to share growing amounts of data with medical professionals, it’s unclear how much data flows through them.

In 2014, Apple released HealthKit, a tool enabling health systems to pull in patients’ health data, with their permission, from their iPhones. At the time, then-Mayo Clinic CEO John Noseworthy said this would “revolutionize how the health industry interacts with people.” But a Mayo spokesperson told KHN the system’s use of HealthKit is now limited.

Cedars-Sinai Medical Center said in 2015 that, through HealthKit, more than 87,000 patients had been able to share their data, an arrangement Cook touted on a quarterly earnings call. A Cedars-Sinai spokesperson declined to comment on what became of this project.

Even Apple’s attempts to use its own employees’ app data to improve their medical care have yet to pan out. The Wall Street Journal reported that an Apple initiative testing a new primary care service for doctors to monitor Apple employees’ health through their devices had stalled. The company said many of the story’s assertions were inaccurate.

There have been a few reports of success. Ochsner Health in Louisiana reported that patients in a hypertension management program that provided health coaching while monitoring blood pressure data from mobile phones were more likely than a control group to get their blood pressure under control, follow their medication regimen and feel satisfied with their care. The health system now also has remote monitoring programs for diabetes, chronic obstructive pulmonary disease and expectant mothers, an Ochsner spokesperson said.

And Epic, the nation’s largest health records company, said that over 100 of its large health system clients are using Apple HealthKit to capture data from home monitoring devices like blood pressure cuffs.

But patient-generated data has not been widely adopted in health care, said Dr. Benjamin Rosner, an associate professor of medicine at the University of California-San Francisco. He and others point out major hurdles.

One, Rosner said, is that evidence is mixed that monitoring such data improves health.

Another is that doctors generally aren’t reimbursed by health insurers for reviewing data that patients collect at home.

“In America, we generally pay doctors and health systems to see patients in front of them and do things to them when they show up,” said Matthew Holt, a health technology startup adviser.

In instances in which doctors can be reimbursed for remotely monitoring patients, like those with certain chronic conditions, the payment is usually low, Rosner said.

And many doctors already feel inundated with patient health information and electronic health record tasks.

“Primary care doctors are overwhelmed by their inboxes,” said Dr. Rebekah Gardner, an associate professor of medicine at Brown University. “Before people start buying Apple Watches and sending all their sleep hours, let’s show that this improves health.”

She said she wants to see more rigorous, independently funded studies showing that monitoring data from wearable devices makes people healthier or improves their care.

Liability concerns weigh on some doctors’ minds. Dr. Oguchi Nkwocha, a community health center physician-executive in Salinas, California, worries he could be held liable if he missed something in “a diary of data,” but said he might be more open to data that was analyzed and presented with predictive insights.

Apple isn’t the only tech company that has struggled to make health app data-sharing mainstream. Both Google and Microsoft enabled patients to share their data in their personal health record products over a decade ago but shut down these businesses because of limited user adoption, Holt noted.

Optimists believe that, eventually, research will show that more forms of data monitoring lead to better health and that technology could help make the data more digestible for doctors. Then, Apple might succeed in making its apps part of medicine — assuming the payment system changes in a way that gives providers more incentives to identify problems early and intervene before people get critically ill, Holt said.

“This is exciting for the future of chronic care management,” Dr. David Cho, a UCLA Health cardiologist, said of the new feature. With data at his fingertips on risk factors like exercise, diet and blood pressure, he believes he could help his patients manage chronic conditions more easily. That data, combined with virtual visits, could mean fewer office visits.

Apple’s announcement that it can integrate patient-generated data into the electronic medical record could be critical for doctors who want to see their patients’ self-collected information but don’t have time to hunt for it, said Dr. Seth Berkowitz, who leads a remote monitoring app pilot program at Beth Israel Deaconess Medical Center in Boston.

Some patients welcome a feature that would make it easy to share data with their doctors. Jen Horonjeff, a New York City-based autoimmune disorder patient and health care startup CEO, recently discovered by using an Apple Watch tracker that her heart rate, which doctors had described as irregular, registered as normal.

“I would absolutely send this to my physicians,” Horonjeff said, noting that her data would give doctors an accurate baseline of her heart rate if she were hospitalized.

But Gary Wolf of Berkeley, California, co-founder of the Quantified Self, a movement of people who track their health and other personal data, said that finding a doctor trained to make decisions with “fine-resolution data” is impossible.

Without more evidence that getting health app data to doctors is clinically beneficial, it will be hard to assess whether Apple is succeeding, said Neil Sehgal, assistant professor of health policy at the University of Maryland.

“Right now, we don’t know if there are consequences if you don’t put your Apple Watch data into your electronic medical record,” he said.

If evidence ultimately shows a benefit to sharing this information with doctors, he said, “that benefit will be concentrated among people who can buy the $1,000 phone and $400 watch.”

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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After an agonizing three-day wait, the results of a blood test came back in her online patient portal — but she didn’t understand them. As hours passed, Ramsey bit her nails and paced. The next day, she gave in and emailed her doctor, who responded with an explanation and a plan.

For Ramsey, now 24, instant access to her test results had been a mixed blessing. “If there’s something I’m really nervous about,” she said, “then I want interpretations and answers with the result. Even if it takes a few days longer.”

On April 5, a federal rule went into effect that requires health care providers to give patients like Ramsey electronic access to their health information without delay upon request, at no cost. Many patients may now find their doctors’ clinical notes, test results and other medical data posted to their electronic portal as soon as they are available.

Advocates herald the rule as a long-awaited opportunity for patients to control their data and health.

“This levels the playing field,” said Jan Walker, co-founder of OpenNotes, a group that has pushed for providers to share notes with patients. “A decade ago, the medical record belonged to the physician.”

But the rollout of the rule has hit bumps, as doctors learn that patients might see information before they do. Like Ramsey, some patients have felt distressed when seeing test results dropped into their portal without a physician’s explanation. And doctors’ groups say they are confused and concerned about whether the notes of adolescent patients who don’t want their parents to see sensitive information can be exempt — or if they will have to breach their patients’ trust.

Patients have long had a legal right to their medical records but often have had to pay fees, wait weeks or sift through reams of paper to see them.

The rule aims not only to remove these barriers, but also to enable patients to access their health records through smartphone apps, and prevent health care providers from withholding information from other providers and health IT companies when a patient wants it to be shared. Privacy rules under the Health Insurance Portability and Accountability Act, which limit sharing of personal health information outside a clinic, remain in place, although privacy advocates have warned that patients who choose to share their data with consumer apps will put their data at risk.

Studies have shown numerous benefits of note sharing. Patients who read their notes understand more about their health, better remember their treatment plan and are more likely to stick to their medication regimen. Non-white, older or less educated patients report even greater benefits than others.

For Sarah Ford, 34, of Pittsburgh, who has multiple sclerosis, reading her doctor’s notes helps her make the most of each visit and feel informed.

“I don’t like going into the office and feeling like I don’t know what’s going to happen,” she said. If she wants to try a new medication or treatment, reading previous notes helps her prepare to discuss it with her doctor, she said.

The new rule will have less impact on Ford and the more than 50 million patients in the U.S. whose doctors had already made their notes available to patients before the rule kicked in. However, only about a third of patients with access to secure online health portals were using them.

While most doctors who have shared notes with patients think it’s a good idea, the policy has drawbacks. One recent study found that half of doctors reported writing their notes less candidly after they were opened to patients.

Another study, published in February, found that 1 in 10 patients had ever felt offended or judged after reading a note. The study’s lead author, Dr. Leonor Fernandez, of Beth Israel Deaconess Medical Center, said there is a “legacy of certain ways of expressing things in medicine that didn’t really take into account how it reads when you’re a patient.”

“Maybe we can rethink some of these,” she said, citing the phrase “patient admits to drinking two glasses of wine a day” as an example. “Why not just write ‘two glasses of wine a day’?”

UC San Diego Health started phasing in open notes to patients in 2018 and removed a delay in the release of lab results last year. Overall, said Dr. Brian Clay, chief medical information officer, both have been uneventful. “Most patients are agnostic, some are super-jazzed, and a few are distressed or have lots of questions and are communicating with us a lot,” he said.

There are exceptions to the requirement to release patient data, such as psychotherapy notes and notes that could harm a patient or someone else if released.

Dr. David Bell, president of the Society for Adolescent Health and Medicine, believes it’s unclear exactly what qualifies as “substantial harm” to a patient — the standard that must be met for doctors to withhold an adolescent patient’s notes from a parent. Clarity, he said, is especially important to protect teenagers living in states with less restrictive laws on parental access to medical records.

Most electronic medical records are not equipped to segregate sensitive pieces from other information that might be useful for a parent in managing their child’s health, he added.

Some doctors say receiving devastating test results without counseling can traumatize patients. Dr. James Kenealy, an ear, nose and throat doctor in central Massachusetts, said a positive cancer biopsy result for one of his patients was automatically pushed to his portal over the weekend, blindsiding both. “You can give bad news, but if you have a plan and explain, they’re much better off,” he said.

Such incidents aren’t affecting the majority of patients, but they’re not rare, said Dr. Jack Resneck Jr., an American Medical Association board trustee. The AMA is advocating for “tweaks” to the rule, he said, like allowing brief delays in releasing results for a few of the highest-stakes tests, like those diagnosing cancer, and more clarity on whether the harm exception applies to adolescent patients who might face emotional distress if their doctor breached their trust by sharing sensitive information with their parents.

The Office of the National Coordinator for Health Information Technology, the federal agency overseeing the rule, responded in an email that it has heard these concerns, but has also heard from clinicians that patients value receiving this information in a timely fashion, and that patients can decide whether they want to look at results once they receive them or wait until they can review them with their doctor. It added that the rule does not require giving parents access to protected health information if they did not already have that right under HIPAA.

Patient advocate Cynthia Fisher believes there should be no exceptions to immediately releasing results, noting that many patients want and need test results as soon as possible, and that delays can lead to worse health outcomes. Instead of facing long wait times to discuss diagnoses with their doctors, she said, patients can now take their results elsewhere. “We can’t assume the consumer is ignorant and unresourceful,” she said.

In the meantime, hospitals and doctors are finding ways to adapt, and their tactics could have lasting implications for patient knowledge and physician workload. At Massachusetts General Hospital, a guide for patients on how to interpret medical terminology in radiology reports is being developed, said Dr. William Mehan, a neuroradiologist.

An internal survey run after radiology results became immediately available to patients found that some doctors were monitoring their inbox after hours in case results arrived. “Burnout has come up in this conversation,” Mehan said.

Some electronic health records enable doctors to withhold test results at the time they are ordered, said Jodi Daniel, a partner at the law firm Crowell & Moring. Doctors who can do this could ask patients whether they want their results released immediately or if they want their doctor to communicate the result, assuming they meet certain criteria for exceptions under the rule, she said.

Chantal Worzala, a health technology policy consultant, said more is to come. “There will be a lot more conversation about the tools that individuals want and need in order to access and understand their health information,” she said.

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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“They mentioned it like it was an amenity, like ‘We have a swimming pool and a vaccination program,’” said Crow, a librarian in southern Maryland. “It was definitely appealing to me.” Vaccines, she felt, would help ease her concerns about whether a congregate living situation would be safe for her parents, and for her to visit them; she has lupus, an autoimmune condition.

As the coronavirus death toll soars and demand for the covid vaccines dwarfs supply, an army of hospitals, clinics, pharmacies and long-term care facilities has been tasked with getting shots into arms. Some are also using that role to attract new business — the latest reminder that health care, even amid a global pandemic, is a commercial endeavor where some see opportunities to be seized.

“Most private sector companies distributing vaccines are motivated by the public health imperative. At some point, their DNA also kicks in,” said Roberta Clarke, associate professor emeritus of marketing at Boston University.

Among senior living facilities — which saw their largest drop in occupancy on record last year — some companies are marketing vaccinations to recruit residents. Sarah Ordover, owner of Assisted Living Locators Los Angeles, a referral agency, said many in her area are offering vaccines “as a sweetener” to prospective residents, sometimes if they agree to move in before a scheduled vaccination clinic.

Oakmont Senior Living, a high-end retirement community chain with 34 locations, primarily in California, has advertised “exclusive access” to the vaccines via social media and email. A call to action on social media reads: “Reserve your apartment home now to schedule your Vaccine Clinic appointment!”

Although the vaccine offer was a selling point for Crow, it wasn’t for her parents, who have not been concerned about contracting covid and didn’t want to forgo their independence, she said. Ultimately, they moved in with her sister, who could arrange home care services.

This marketing approach might sway others. Oakmont Senior Living, based in Irvine, reported 92 move-ins across its communities last month, a 13% increase from January 2020, noting the vaccine is “just one factor among many” in deciding to become a resident.

But some object to facilities using vaccines as a marketing tool. “I think it’s unethical,” said Dr. Michael Carome, director of health research at consumer advocacy group Public Citizen. While he believes that facilities should provide vaccines to residents, he fears attaching strings to a vaccine could coerce seniors, who are particularly vulnerable and desperate for vaccines, into signing a lease.

Tony Chicotel, staff attorney at California Advocates for Nursing Home Reform, worries that seniors and their families could make less informed decisions when incentivized to sign by a certain date. “You’re thinking, ‘I’ve got to get moved in in the next week or otherwise I don’t get this shot. I don’t have time to read everything in this 38-page contract,’” he said.

Oakmont Senior Living responded by email: “Potential residents and their families are always provided with the information they need to be confident in a decision to choose Oakmont.”

Some people say facilities are simply meeting their demand for covid vaccines. “Who is going to put an elderly person in a place without a vaccine? Congregate living has been a hotbed of the virus,” said retired philanthropy consultant Patti Patrizi. She and her son recently chose a retirement community in Los Angeles for her ex-husband for myriad reasons unrelated to the vaccines. However, they accelerated the move by two weeks to coincide with a vaccination clinic.

“It was definitely not a marketing tool to me,” said Patrizi. “It was my insistence that he needs it before he can live there.”

The concept of using vaccines to market a business isn’t new. The 2009 H1N1 pandemic ushered in drugstore flu shots, and pharmacies have since credited flu vaccines with boosting storefront sales and prescriptions. Many offer prospective vaccine recipients coupons, gift cards or rewards points.

A few pharmacies have continued these marketing activities while rolling out covid shots. On its covid vaccine information site, CVS Pharmacy encouraged visitors to sign up for its rewards program to earn credits for vaccinations. Supermarket and pharmacy chain Albertsons and its subsidiaries have a button on their covid vaccine information sites saying, “Transfer your prescription.”

But the pandemic isn’t business as usual, said Alison Taylor, a business ethics professor at New York University. “This is a public health emergency,” she said. Companies distributing covid vaccines should ask themselves “How can we get society to herd immunity faster?” rather than “How many customers can I sign up?” she said.

In an email response, CVS said it had removed the reference to its rewards program from its covid vaccination page. Patients will not earn rewards for receiving a covid shot at its pharmacies, the company said, and its focus remains on administering the vaccines.

Albertsons said via email that its covid vaccine information pages are intended to be a one-stop resource, and information about additional services is at the very bottom of these pages.

Boston University’s Clarke doesn’t see any harm in these marketing activities. “As long as the patient is free to say ‘no, thank you,’ and doesn’t think they’ll be penalized by not getting a vaccine, it’s not a problem,” she said.

At least one health care provider is offering complimentary services to people eligible for covid vaccines. Membership-based primary care provider One Medical — now inoculating people in several states, including California — offers a free 90-day membership to groups, such as people 75 and older, that a local health department has tasked the company with vaccinating, according to an email from a company spokesperson who noted that vaccine supply and eligibility requirements vary by county.

The company said it offers the membership — which entails online vaccine appointment booking, second dose reminders and on-demand telehealth visits for acute questions — because it believes it can and should do so, especially when many are struggling to access care.

While these may very well be the company’s motives, a free trial is also a marketing tactic, said Silicon Valley health technology investor Dr. Bob Kocher. Whether it’s Costco or One Medical, any company offering a free sample hopes recipients buy the product, he said.

Offering free trial memberships could pay off for providers like One Medical, he said; local health departments can refer many patients, and converting a portion of vaccine recipients into members could offer a cheaper way for providers to get new patients than finding them on their own.

“Normally, there’s no free stuff at a provider, and you have to be sick to try health care. This is a pretty unique circumstance,” said Kocher, who doesn’t see boosting public health and taking advantage of an uncommon marketing opportunity as mutually exclusive here. “Vaccination is a super valuable way to help people,” he said. “A free trial is also a great way to market your service.”

One Medical insisted the membership trial is not a marketing ploy, noting that the company is not collecting credit card information during registration or auto-enrolling trial participants into paid memberships. But patients will receive an email notifying them before their trial ends, with an invitation to sign up for membership, said the company.

Health equity advocates say more attention needs to be paid to the people who slip under the radar of marketers — yet are at the highest risk of getting and dying from covid, and the least likely to be vaccinated.

Kathryn Stebner, an elder-abuse attorney in San Francisco, noted that the high cost of many assisted living facilities is often prohibitive for the working class and people of color. “African Americans are dying [from covid] at a rate three times as much as white people,” she said. “Are they getting these vaccine offers?”

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

The pandemic left McDermott feeling especially lonely. She restricted social interactions because her fatty liver disease put her at greater risk of complications should she contract covid-19. The 26-year-old Santa Cruz resident stopped regularly eating and taking her psychiatric medications, and contemplated suicide.

When McDermott’s thoughts grew increasingly dark in June, she checked into Second Story, a mental health program based in a home not far from her own, where she finds nonclinical support in a peaceful environment from people who have faced similar challenges.

Second Story is what is known as a “peer respite,” a welcoming place where people can stay when they’re experiencing or nearing a mental health crisis. Betting that a low-key wellness approach, coupled with empathy from people who have “been there,” can help people in distress recover, this unorthodox strategy has gained popularity in recent years as the nation grapples with a severe shortage of psychiatric beds that has been exacerbated by the pandemic.

Peer respites allow guests to avoid psychiatric hospitalization and emergency department visits. They now operate in at least 14 states. California has five, in the San Francisco Bay Area and Los Angeles County.

“When things are really tough and you need extra support but you don’t need hospitalization, where’s that middle ground?” asked Keris Myrick, founder of Hacienda of Hope, a peer respite in Long Beach, California.

People with serious mental illness are more likely to experience emotional distress in the pandemic than the general population, said Dr. Benjamin Druss, a psychiatrist and professor at Emory University’s public health school, elaborating that they tend to have smaller social networks and more medical problems.

That was the case with McDermott. “I don’t have a full-on relationship with my family. My friends are my family,” she said. She yearned to “give them a hug, see their smile or stand close and take a selfie.”

The next best thing was Second Story, located in a pewter-gray split-level, five-bedroom house in Aptos, a quaint beach community near McDermott’s Santa Cruz home.

Peer respites offer people in distress short-term (usually up to two weeks), round-the-clock emotional support from peers — people who have experienced mental health conditions and are trained and often certified by states to support others with similar issues — and activities like arts, meditation and support groups.

“You can’t tell who’s the guest and who’s the staff. We don’t wear uniforms or badges,” said Angelica Garcia-Guerrero, associate director of Hacienda of Hope’s parent organization.

Peer respites are free for guests but rarely covered by insurance. States and counties typically pick up the tab. Hacienda of Hope’s $900,000 annual operating costs are covered by Los Angeles County through the Mental Health Services Act, a policy that directs proceeds from a statewide tax on people who earn more than $1 million annually to behavioral health programs.

In September, California Gov. Gavin Newsom signed a bill that would establish a statewide certification process for mental health peer providers by July 2022.

For now, however, peer respite staff members in California are not licensed or certified. Peer respites typically don’t offer clinical care or dispense psychiatric drugs, though guests can bring theirs. Peers share personal stories with guests but avoid labeling them with diagnoses. Guests must come — and can leave — voluntarily. Some respites have few restrictions on who can stay; others don’t allow guests who express suicidal thoughts or are homeless.

Peer respite is one of several types of programs that divert people facing behavioral health crises from the hospital, but the only one without clinical involvement, said Travis Atkinson, a consultant at TBD Solutions, a behavioral health care company. The first peer respites arose around 2000, said Laysha Ostrow, CEO of Live & Learn, which conducts behavioral health research.

The approach seems to be expanding. Live & Learn counts 33 peer respites today in the U.S., up from 19 six years ago. All are overseen and staffed by people with histories of psychiatric disorders. About a dozen other programs employ a mix of peers and laypeople who don’t have psychiatric diagnoses, or aren’t peer-led, Atkinson said.

Though she had stayed at Second Story several times over the past five years, McDermott hesitated to return during the pandemic. However, she felt reassured after learning that guests were required to wear a mask in common areas and get a covid test before their stay. To ensure physical distancing, the respite reduced capacity from six to five guests at a time.

During her two-week stay, McDermott played with the respite’s two cats and piano — activities she found therapeutic. But most helpful was talking to peers in a way she couldn’t with her mental health providers, she said. In the past, McDermott said, she had been involuntarily admitted to a psychiatric hospital after she expressed suicidal thoughts. When she shared similar sentiments with Second Story peers, they offered to talk, or call the hospital if she wanted.

“They were willing to listen,” she said. “But they’re not forceful about helping.”

By the end of the visit, McDermott said that she felt understood and her loneliness and suicidal feelings had waned. She started eating and taking her medications more consistently, she said.

The small number of studies on respites have found that guests had fewer hospitalizations and accounted for lower Medicaid spending for nearly a year after a respite stay than people with similar conditions who did not stay in a respite. Respite visitors spent less time in the hospital and emergency room the longer they stayed in the respite.

Financial struggles and opposition from neighbors have hindered the growth of respites, however. Live & Learn said that although five peer respites have been created since 2018, at least two others closed because of budget cuts.

Neighbors have challenged nearby respite placements in a few instances. Santa Cruz-area media outlets reported in 2019 that Second Story neighbors had voiced safety concerns with the respite. Neighbor Tony Crane told California Healthline that guests have used drugs and consumed alcohol in the neighborhood, and he worried that peers are not licensed or certified to support people in crisis. He felt it was too risky to let his children ride their bikes near the respite when they were younger.

In a written response, Monica Martinez, whose organization runs Second Story, said neighbors often target community mental health programs because of concerns that “come from misconceptions and stigma surrounding those seeking mental health support.”

Many respites are struggling with increased demand and decreased availability during the pandemic. Sherry Jenkins Tucker, executive director of Georgia Mental Health Consumer Network, said its four respites have had to reduce capacity to enable physical distancing, despite increased demand for services. Other respites have temporarily suspended stays because of the pandemic.

McDermott said her mental health had improved since staying at Second Story in June, but she still struggles with isolation amid the pandemic. “Holidays are hard for me,” said McDermott, who returned to Second Story in November. “I really wanted to be able to have Thanksgiving with people.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).