Instead of typing on her computer keyboard during the exam, Urban’s primary care physician at the practice in Media, Pennsylvania, had an ambient artificial intelligence scribe take notes. At the end of the 30-minute visit, Urban’s doctor showed her the AI summary of the appointment, neatly organized into sections for her medical history, the physical exam findings, and an assessment and treatment plan for her rheumatoid arthritis and hot flashes, among other details.

The clinical note, which Urban could also review on the patient portal at home, was incredibly thorough, she said. It summarized all of her questions and concerns and the doctor’s responses. The scribe “made sure we didn’t miss anything,” Urban said.

Ambient AI scribes are being hailed by physicians as a game changer that helps free them to focus on their patients rather than their computer keyboard. By releasing doctors from the onerous and time-consuming task of documenting what happens during every patient encounter, , AI scribes may help reduce physician burnout and after-hours “pajama time” catching up on work in the evening.

The potential of AI to transform every aspect of the health care system — from patient care to clinical efficiency to medical innovation — is an area of intense focus, including by the Trump administration.

Last January, President Donald Trump issued an to remove barriers to American leadership in AI. Later in the year, a from the federal Department of Health and Human Services invited stakeholders to weigh in on how the department can accelerate the adoption of AI in health care.

Several startup vendors in recent years have introduced ambient AI scribe products that can be integrated into electronic health records. EHR market leader Epic is technology, which it expects to release widely early this year, according to , a family medicine physician who is chief medical officer and vice president of clinical informatics at Epic.

Health tech experts estimate that a third of providers have access to ambient AI scribe technology. As adoption looks likely to grow rapidly over the next few years, many expect it to become more of a recruiting tool, a minimum requirement for incoming clinicians, who are increasingly prioritizing work-life balance.

“It’s part of keeping doctors happy,” said , a professor and the chair of the Department of Medicine at the University of California-San Francisco, whose forthcoming book, , explores how AI is transforming health care. “Health systems that initially might have done a hard-nosed return-on-investment calculation — many are softening on that and realizing that the cost of recruiting and retaining doctors is pretty high.”

But many questions remain. Does the use of ambient AI scribes improve patient care and health outcomes? Will doctors use time they gain by employing an AI scribe to improve the quality of the time they spend with their patients or just boost the number of patients they see? To what extent will expanding the amount of detail available from a patient visit lead to bigger bills if the AI scribe is integrated with a coding app that optimizes provider charges?

For now, these questions remain mostly unanswered.

Urban said that the AI scribe didn’t change her experience as a patient very much. Typically, after a patient gives verbal permission, the AI scribe records the visit on a phone and organizes the conversation into the structure of a clinical note, filtering out small talk that isn’t pertinent to the medical visit but incorporating relevant details about a family member’s recent cancer diagnosis, for example. The scribe’s note is often then integrated into the provider’s EHR. The doctor later reviews the note and signs off on it.

Even though the visit may not feel very different to patients, some clinicians report that ambient AI scribes are changing patient encounters in unanticipated ways.

“Now, when I’m doing a physical exam, I have to say what I’m doing and what I’m finding out loud in order for the AI scribe to document it,” said , Urban’s primary care doctor. “People find that very interesting,” she said.

When Capalongo places her stethoscope over the carotid artery under a patient’s jaw, for example, she might say that she doesn’t hear a “bruit,” or vascular murmur, whose presence could indicate atherosclerosis. Patients have told her, “I never knew why a doctor would listen there,” she said.

Saying things out loud for the AI scribe that would typically appear only in a clinical note can create its own set of challenges, particularly during sensitive physical exams. Doctors may feel it’s important to adjust their conversation accordingly.

“Sometimes patients are anxious and scared and my saying things that they don’t understand or they may worry about during an uncomfortable examination does not help the situation and honestly is insensitive to what the patient is going through,” said , a professor in the Division of Colon and Rectal Surgery at the University of Minnesota, who is also chief health informatics and AI officer at Fairview Health Services in Minneapolis. “I’ll keep that top of mind and make sure I record it” after the visit.

“How we have conversations with patients about these tools is really important, in particular for maintaining trust and ensuring accurate information,” Melton-Meaux said.

Studies have found that, across a range of measures such as completeness, timeliness, and coherence, the notes created by ambient AI scribes are generally at least as good as, and sometimes better than, traditional documentation, said , a pediatrician who is vice president for applied informatics at the University of Pennsylvania Health System.

An ongoing concern is around AI “hallucinations,” in which false, sometimes fabricated information appears in an AI output.

Kaiser Permanente, an of ambient AI scribe technology, provides it to more than 25,000 doctors, advanced practice providers, and pharmacists systemwide. It has found hallucinations to be “quite rare,” said , an internist who is vice president of AI and emerging technologies at KP.

But they happen. An AI-scribe-generated note, for instance, might say that the doctor planned to refer someone to a neurologist or to follow up in two weeks. The problem? The doctor might not have said that.

“The technology is not perfect, and that’s why physicians are reviewing it,” Yang said. It’s learning from regular physician visits as it goes, he said. That’s why having a person check the work product is critical.

Still, even such a “human-in-the loop” system is fraught, Wachter said. “Humans stink at maintaining vigilance over time,” he said.

As the use of ambient AI scribes becomes routine, some clinicians worry that the technology will widen the divide between health care haves and have-nots.

Large health systems are able to move forward with the technology, Melton-Meaux said. But what about critical access hospitals or small private practices? “There need to be more resources,” she said.

Physicians’ enthusiasm for ambient AI scribes stands in sharp contrast to their negative reaction to electronic health record systems that have become widely adopted in recent years to replace paper charts.

“During the last 10 years, when EHRs became a thing, we all became very grumpy, overworked data scribes,” Wachter said.

The introduction of AI scribes makes physicians feel like technology is working for them rather than the other way around, health care AI experts said.

And AI scribes are “training wheels” for more consequential adoption of AI in health care, Wachter said.

To improve health care value and save costs, Wachter said, we need a system that makes it more likely that physicians will practice evidence-based medicine to order the right tests and prescribe the right medications.

“It’s a few years away, but it’s all AI-dependent,” he said.

Epic has introduced roughly 60 AI use cases for patients, clinicians, and administration, with over 100 more in the works.

“It’s so much bigger than a scribe,” said Epic’s Gerhart. “It’s literally listening and acting in a way that tees things up for me so that I can take action.”

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U.S. Immigration and Customs Enforcement agents have also shown up at community clinics. Health providers say that officers have tried to hosting a mobile clinic, waved a machine gun in the faces of clinicians serving the homeless, and hauled a passerby into an unmarked car outside a community health center.

In response to such immigration enforcement activity in and around clinics and hospitals, Democratic Gov. Gavin Newsom last month signed , which prohibits medical establishments from allowing federal agents without a valid search warrant or court order into private areas, including places where patients receive treatment or discuss health matters.

But while the bill received broad support from medical groups, health care workers, and immigrant rights advocates, legal experts say California can’t stop federal authorities from carrying out duties in public places, which include hospital lobbies and general waiting areas, health facility parking lots, and surrounding neighborhoods — places where recent ICE activities have sparked outrage and fear. Previous federal restrictions on immigration enforcement in or near sensitive areas, including health care establishments, were rescinded by the Trump administration in January.

“The issue that states encounter is the ,” said , a supervising attorney and clinical teaching fellow at Georgetown Law. She said the federal government does have the right to conduct enforcement activities, and there are limits to what the state can do to stop them.

California’s law designates a patient’s immigration status and birthplace as protected information, which like medical records cannot be disclosed to law enforcement without a warrant or court order. And it requires health care facilities to have clear procedures for handling requests from immigration authorities, including training staff to immediately notify a designated administrator or legal counsel if agents ask to enter a private area or review patient records.

Several other Democratic-led states have also taken up legislation to protect patients at hospitals and health centers. In May, Colorado Gov. Jared Polis signed the bill, which penalizes hospitals for unauthorized sharing of information about people in the country illegally and bars ICE agents from entering private areas of health care facilities without a judicial warrant. In Maryland, requiring the attorney general to create guidance on keeping ICE out of health care facilities went into effect in June. New Mexico has instituted , and Rhode Island has from asking patients about their immigration status.

Republican-led states have aligned with federal efforts to prevent health care spending on immigrants without legal authorization. Such immigrants are not eligible for comprehensive Medicaid coverage, but states do bill the federal government for in certain cases. Under a , Florida requires hospitals that accept Medicaid to ask about a patient’s legal status. In Texas, hospitals now have to report how much they spend on care for immigrants without legal authorization.

“Texans should not have to shoulder the burden of financially supporting medical care for illegal immigrants,” Gov. Greg Abbott said in issuing his last year.

California’s efforts to rein in federal enforcement come as the state, where more than a quarter of residents , has become a target of President Donald Trump’s immigration crackdown. Newsom signed SB 81 as part of a prohibiting immigration agents from entering schools without a warrant, requiring law enforcement officers to identify themselves, and banning officers from wearing masks. SB 81 was passed on a party-line vote with no formal opposition.

“We’re not North Korea,” Newsom said during a September bill-signing ceremony. “We’re pushing back against these authoritarian tendencies and actions of this administration.”

Some supporters of the bill and legal experts said California’s law can prevent ICE from violating existing patient privacy rights. Those include the Fourth Amendment, which without a warrant in places where people have a reasonable expectation of privacy. Valid warrants must be . But ICE agents frequently use administrative warrants to try to gain access to private areas they don’t have the authority to enter, Genovese said.

“People don’t always understand the difference between an administrative warrant, which is a meaningless piece of paper, versus a judicial warrant that is enforceable,” Genovese said. Judicial warrants are rarely issued in immigration cases, she added.

The Department of Homeland Security has said or identification requirements for law enforcement officers, slamming them as unconstitutional. The department did not respond to a request for comment on the state’s new rules for health care facilities, which went into immediate effect.

Tanya Broder, a senior counsel with the National Immigration Law Center, said immigration arrests at health care facilities appear to be relatively rare. But the federal decision to rescind protections around sensitive areas, she said, “has generated fear and uncertainty across the country.” Many of the most high-profile news reports of immigration agents at health care facilities have been in California, largely involving detained patients brought in for care.

The California Nurses Association, the state’s largest nurses union, was a co-sponsor of the bill and raised concerns about the treatment of Milagro Solis-Portillo, a 36-year-old Salvadoran woman who was under round-the-clock ICE surveillance at Glendale Memorial Hospital over the summer.

Union leaders also of agents at California Hospital Medical Center south of downtown Los Angeles. According to Anne Caputo-Pearl, a labor and delivery nurse and the chief union representative at the hospital, agents brought in a patient on Oct. 21 and remained in the patient’s room for almost a week. The reported that a TikTok streamer, Carlitos Ricardo Parias, was taken to the hospital that day after he was wounded during an immigration enforcement operation in South Los Angeles.

The presence of ICE was intimidating for nurses and patients, Caputo-Pearl said, and prompted visitor restrictions at the hospital. “We want better clarification,” she said. “Why is it that these agents are allowed to be in the room?”

Hospital and clinic representatives, however, said they are already following the law’s requirements, which largely reinforce put out by state Attorney General Rob Bonta in December.

Community clinics throughout Los Angeles County, which serve over 2 million patients a year, including a large portion of immigrants, have been implementing the attorney general’s guidelines for months, said Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County. But she said the law should help ensure uniform standards across health facilities that clinics refer out to and reassure patients that procedures are in place to protect them.

Still, it can’t prevent immigration raids from happening in the broader community, which have made some patients and even health workers afraid to venture outside, McCarthy said. Some incidents have occurred near clinics, including an arrest of a passerby outside a clinic in East Los Angeles, which a security guard caught on video, she said.

“We’ve had clinic staff say, ‘Is it safe for me to go out?’” she said.

At St. John’s Community Health, a network of 24 community health centers and five mobile clinics in South Los Angeles and the Inland Empire, CEO Jim Mangia agreed that the new law can’t prevent all immigration enforcement activity, but he said it does give clinics a tool to push back if agents show up, something his staff has already had to do.

Mangia said St. John’s staff had two encounters with immigration agents over the summer. In one, he said, staff stopped armed officers from entering a gated parking lot at a drug and alcohol recovery center where doctors and nurses were seeing patients at a mobile health clinic.

Another occurred in July, when immigration agents MacArthur Park on horses and in armored vehicles, in a show of force by the Trump administration. Mangia said masked officers in full tactical gear surrounded a street medicine tent where St. John’s providers were tending to homeless patients, screamed at staff to get out, and pointed a gun at them. The providers were so shaken by the episode, Mangia said, that he had to bring in mental health professionals to help them feel safe going back out on the street.

A DHS spokesperson told CalMatters that in the rare instance where agents enter certain sensitive locations, officers would need “.”

Since then, St. John’s has doubled down on providing support and training to staff and has offered patients afraid to go out the option of home medical visits and grocery deliveries. Patient fears and ICE activity have decreased since the summer, Mangia said, but with DHS planning to , he doubts that will last.

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“The frustration with IMPACT is well known,” said , a Democrat from Houston, referring to the aging software.

That frustration, he added, is felt widely, from caseworkers to the court system, and boils down to a simple reality: , has been in place since 1996. It was designed to be a secure location for foster children’s records, including their health records and histories of neglect and abuse. But it doesn’t allow such information to be easily added by or shared among state and local health agencies, Medicaid, and even health care providers for the foster children in Texas’ care. Without that ability, children’s medical needs are getting lost in transit. After all, foster kids tend to move from place to place, home to home, and doctor to doctor.

A by court-appointed monitors is full of harrowing stories and frightening missteps. For instance, in January 2022, a residential treatment center lost track of a 16-year-old boy’s medications. The supply ran out but the center “didn’t realize it.” The boy, who had a history of suicidal ideation, had to undergo an emergency psychiatric consult.

The report also told the story of a foster child who had to stay in a Dallas hotel because caseworkers were unable to find her a family. But no one knew she had prescription drugs in her backpack. When she was left alone in her room, she swallowed a handful of pills. She was taken to a behavioral hospital. As of last September, she was in juvenile detention.

Such accounts, and the concerns they trigger about the state’s broken foster care system, have begun to find traction this legislative session.

The state’s Department of Family and Protective Services, for instance, which oversees the system, has been called in for a series of status hearings regarding its overall progress. Those involved say lasting improvement has to start with modernizing DFPS’ technological infrastructure, but whether their pleas will be met with action is unclear.

Making matters more frustrating for caseworkers is that the federal government in 2015 introduced a new set of regulatory requirements. States could use them to build a framework and become part of a that, from the federal view, would help states better track foster kids and their health care needs. Texas, however, is one of four states that has so far opted against using it.

The state now finds itself in the unprecedented situation of having a budget , and DFPS is bidding to snag some of that windfall. During an appropriations meeting in February, commissioner said that priorities for any such allocation would include building community-based care teams and increasing pay to boost employee retention. The department isn’t planning to replace or make sweeping changes to IMPACT anytime soon.

That’s despite the fact that IMPACT is older than Google — and has had far fewer updates.

Marissa Gonzales, DFPS media relations director, said that when states were given the option to adopt the new federal standards — which incorporated modern technology to enable data to be shared between systems — the agency opted out because they found the requirements “quite restrictive.” On the table now, however, is a federal offer to cover half the cost of transitioning, she said, adding that the agency is “talking to other states about their experiences, and evaluating our own needs, before deciding next steps.”

According to a and the Texas Alliance of Child and Family Services, transitioning to the new program would cost the state $80 million. It said the state had already spent more than $80 million since 2015 to maintain its current system.

One of the biggest concerns of caseworkers is that IMPACT isn’t capable of supporting data-sharing, also known as interoperability, and flagging potential problems, such as when doctors separately prescribe medications that are dangerous when taken together. This is critical, because foster children are prescribed psychotropic drugs to treat mental health disorders at of other children on Medicaid.

But without such a safety net, the responsibility falls to the caseworker.

“You wouldn’t really expect a CPS worker to have advanced knowledge of psychotropic medications” and which ones children can and cannot take together safely, said Tara Green, co-founder and executive director of the in Houston. But caseworkers have saved children’s lives by catching dangerous medication pairings, she said.

On several occasions, Green said, a caseworker has raised a concern about a child’s medications and a psychiatrist has confirmed that if the issue wasn’t caught then, “this kid would have had a heart attack in the next week or so.”

in the past few years have died while in the state’s care, with most of the deaths attributed to preexisting medical conditions — disorders that, more often than not, require specialized care and treatments.

Asked during a House committee hearing about the timing of a modernization project, Muth seemed to suggest it would be a longer-range fix. “It would not be a process that takes a biennium or two, and you’d have to plan for that,” she said. “So, I still think we’re talking about down the road.”

But Wu told Â鶹ŮÓÅ Health News that putting off even starting such an upgrade will make things worse. The system will “probably already be out-of-date” by the time it’s ready, he said. That’s why “it always feels like we’re in a catch-up mode,” he added.

As it stands, caseworkers have heavy client loads and spend much of their day driving to visits with children who are scattered across counties. But IMPACT isn’t accessible on their mobile devices. That means they often end up transferring paper notes into the program when they return to the office. On top of that, it takes several steps to make a single entry, and the system is prone to freezing.

“All the data that we’re relying on to tell us about the lives of these kids, it has to be taken with a grain of salt,” said , the supervising attorney of ’ foster care team. “Your data is only as good as the ability of the caseworker to keep up with all of that, and they’re trying to juggle so many things.”

Texas’ foster system has been under intense pressure since a federal lawsuit was filed against it in 2011 for “leaving many thousands of children to be harmed while in the state’s care,” the . U.S. District Judge Janis Graham Jack wrote in a scathing that the system “shocks the conscience.” More recently, during a January status hearing, Jack scolded the foster care agency, saying children “come into your care with great needs. I just don’t want them going out of your care with even greater needs, which is what has been happening.”

As part of her ruling, Jack ordered a list of corrections the state agency must make, including hiring more caseworkers to reduce caseloads, stopping the placing of children in foster group homes that lack 24-hour supervision, and tracking child-on-child abuse.

In the eight years since, some progress has been made. For instance, according to the state, , from a per caseworker in 2015 — which exceeded the per worker — to a daily average of 11 at the beginning of 2023.

But caseworkers say updating the foster care system’s technology would provide overall support for the care children receive, rather than placing band-aids on issues.

The new records system would “make it easier to track everything about that kid,” said , the policy and advocacy manager at Texas 2036, since a variety of agencies would have access to that child’s data, and the “more eyes on that kid, the better.”

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Medicare had paid the Blue Cross plan more than $20,000 to cover the care of 11 patients seen by Aggeus Healthcare, a chain of podiatry clinics, in 2011.

Blue Cross said it couldn’t locate any records to justify the payments because Aggeus shut down in the wake of the indictment, which included charges of falsifying patient medical files. So Blue Cross asked the Centers for Medicare & Medicaid Services for a “hardship” exemption to a strict requirement that health plans retain these files in the event of an audit.

CMS granted the request and auditors removed the 11 patients from a random sample of 201 Blue Cross plan members whose records were reviewed.

A review of 90 government audits, released exclusively to KHN in response to a Freedom of Information Act lawsuit, reveals that health insurers that issue Medicare Advantage plans have repeatedly tried to sidestep regulations requiring them to document medical conditions the government paid them to treat.

The audits, the most recent ones the agency has completed, sought to validate payments to Medicare Advantage health plans for 2011 through 2013.

As , auditors uncovered millions of dollars in improper payments — citing overcharges of more than $1,000 per patient a year on average — by nearly two dozen health plans.

The hardship requests, together with other documents obtained by KHN through the lawsuit, shed light on the secretive audit process that Medicare relies on to hold accountable the increasingly popular — which are an alternative to original Medicare and primarily run by major insurance companies.

Reacting to the audit findings, Sen. Chuck Grassley (R-Iowa) called for “aggressive oversight” to recoup overcharges.

“CMS must aggressively use every tool at its disposal to ensure that it’s efficiently identifying Medicare Advantage fraud and working with the Justice Department to prosecute and recover improper payments,” Grassley said in a written statement to KHN.

Medicare reimburses Medicare Advantage plans using a complex formula called a risk score that computes higher rates for sicker patients and lower ones for healthier people.

But federal officials rarely demand documentation to verify that patients have these conditions, or that they are as serious as claimed. Only about 5% of Medicare Advantage plans are audited yearly.

When auditors came calling, the previously hidden CMS records show, they often found little or no support for diagnoses submitted by the Advantage plans, such as chronic obstructive pulmonary disease, diabetes, or vascular disease. Though auditors look at the records of a relatively small sample of patients, they can extrapolate the error rate to the broad population of patients in the Medicare Advantage health plan and calculate millions of dollars in overpayments.

Overall, CMS auditors flagged diagnostic billing codes — which show what patients were treated for — as invalid more than 8,600 times. The audits covered records for 18,090 patients over the three-year period.

In many cases, auditors found that the medical credentials of the health care provider who made the diagnosis were unclear, the records provided were unacceptable, or the record lacked a signature as required. Other files bore the wrong patient’s name or were missing altogether.

The rates of billing codes rejected by auditors varied widely across the 90 audits. The rate of invalid codes topped 80% at Touchstone Health, a defunct New York HMO, according to CMS records. The company also was shown to have the highest average annual overcharges — $5,888 per patient billed to the government.

By contrast, seven health plans had fewer than 10% of their codes flagged.

Registering Excuses

One Medicare Advantage health plan submitted 57 hardship requests, more than any other insurer, though CMS approved only six. In three cases, the health plans said the records were destroyed in floods. Another cited a warehouse fire, and two said the records couldn’t be turned over because a doctor had been convicted for his role in illegally distributing millions of oxycodone pills through his network of pain clinics.

Other Medicare Advantage health plans argued they had no luck retrieving medical records from doctors who had moved, retired, died — and in some cases been arrested or lost their licenses for misconduct.

CMS found most excuses wanting, telling health plans they granted exceptions only in “truly extraordinary circumstances.” CMS said it receives about 100 of these requests for each year it audits and approves about 20% of them.

The Medicare Advantage plan issued by Minnesota Blue Cross won its appeal after it relied on Aggeus Healthcare for diagnoses of vascular disease for 11 of its patients who got podiatry care.

Dr. Yev Gray, a Chicago podiatrist who owned the Aggeus chain that operated in more than a dozen states, was indicted on federal fraud charges in Missouri in October 2015.

The indictment accused him of creating an electronic medical record that fraudulently added billing codes for treatment of medical conditions patients didn’t necessarily have, including vascular disease.

Gray pleaded guilty in May 2017 to charges of conspiracy to defraud the United States and making false statements related to health care matters. He was sentenced to 90 months in prison.

Blue Cross said it “terminated” its network agreements with Aggeus about two weeks after learning of the indictment. Jim McManus, director of public relations for Blue Cross and Blue Shield of Minnesota, had no comment on the case but said the insurer “is committed to investigating credible cases of fraud, waste, and abuse.”

Dara Corrigan, a CMS deputy administrator, said that as a “general matter,” its Medicare Advantage audits “are not designed to detect fraud, nor are they intended to identify all improper diagnosis submissions.”

Protecting Taxpayers

The costs to taxpayers from improper payments have mushroomed over the past decade as plans. CMS has estimated the total overpayments to health plans for the 2011-2013 audits at $650 million, yet how much it will eventually claw back remains unclear.

Payment errors continue to be a drain on the government program. CMS has estimated to Medicare Advantage plans triggered by unconfirmed medical diagnoses at $11.4 billion for 2022.

“This isn’t a partisan issue,” said Sen. Sherrod Brown (D-Ohio). “I’ve requested a plan from CMS as to how they plan to recoup these taxpayer-funded overpayments and prevent future overbilling.”

Leslie Gordon, an acting director of health care for the Government Accountability Office, said CMS needs to speed up the audit and appeals process to get quicker results.

“That is money that should be recovered,” Gordon told KHN.

As Medicare Advantage faces mounting criticism from government watchdogs and in Congress, the industry has tried to rally seniors to its side while disputing audit findings and research that asserts the program .

AHIP, an insurance industry trade group, on the newly released audits as “misleading,” while the pro-industry group said the audits were “in some cases, more than a decade old.”

Jeff De Los Reyes, a senior vice president at GHG Advisors health care consulting group, said he believes the health plans have improved their documentation in recent years. But, he said, “coding is never 100% perfect and there will be errors despite the best of intentions.”

Rep. Katie Porter, a Democrat from Southern California and a critic of Medicare Advantage, countered: “When big insurance bills taxpayers for care it never intends to deliver, it is stealing our tax dollars.”

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But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said , executive director of the .

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson . That is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” , a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with and routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said , director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said , a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

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KHN correspondent Darius Tahir discussed the latest developments related to the federal “Cancer Moonshot” initiative on Houston Public Media’s “Town Square With Ernie Manouse” on Oct. 4. Tahir also discussed how bias can be embedded in medical records on America’s Heroes Group’s “Roundtable” on Oct. 1.

• Read Tahir’s “Embedded Bias: How Medical Records Sow Discrimination”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The History of One’s Medical History

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

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

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

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

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

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

New Technology — Same Biases?

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

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

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

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

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

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

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

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

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

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

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

Conflicts Ahead?

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

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

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

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

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

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

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

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Experts warn that simply claiming the benefits may create paper trails for law enforcement officials in states criminalizing abortion.

“How will law enforcement react to health-related travel, and how will employers respond to that?” are just two of the questions that lawyers are asking themselves, said , a former Obama administration official and the current chief privacy officer for , a California startup that helps people manage chronic conditions, like hypertension and prediabetes.

Some regulations — like the Health Insurance Portability and Accountability Act, which governs health privacy; and other insurance laws — protect some parts of a patient’s private life. Human resources departments are required to keep some medical data closely held, but a determined law enforcement agent with a search warrant or subpoena could ultimately get access to patient data.

That will complicate life for the dozens of corporations promising to protect, or even expand, the abortion benefits for employees and their dependents.

A KHN review of publicly available statements identified at least 114 companies that had pledged to maintain abortion benefits or to expand benefits by offering paid time off or reimbursements for travel and lodging expenses so employees or dependents can obtain an abortion. They include some of the biggest, most prominent corporations in the U.S. For example, 54 of the companies — including Starbucks, Bank of America, and California-based Disney and Apple — are in the Fortune 500.

But some companies were reticent to describe what steps they’re taking to protect employees’ privacy. Only 28 firms replied to KHN inquiries about their confidentiality policies. Most declined to comment. “We don’t have anything to share beyond our statement,” said Erin Rolfes, a spokesperson for Kroger, which has supermarkets in . Microsoft spokesperson Amanda Devlin also declined to share information about how employees would claim reimbursements.

Others were slightly more specific about how their benefits would be administered. Ulta Beauty spokesperson Eileen Ziesemer said the Illinois-based company’s abortion benefits would be managed by its “health care plan and internal systems.”

Asked whether those internal systems would be vulnerable to a subpoena or search warrant, she said, “Given that each state will be implementing the Supreme Court’s decision to overturn Roe v. Wade and state-by-state laws are rapidly evolving, we are unable to comment on potential impacts at this time.”

Observers agreed that how companies will deal with the privacy implications of extending abortion benefits is uncertain.

“They’re all trying to build this bicycle while they’re riding it,” said , director of corporate engagement at , a nonprofit investor in reproductive and maternal health companies.

Employers are “going to try and take a punt on privacy,” predicted , CEO of San Francisco-based , a startup that offers navigation services and virtual care for employers. Many companies clearly intend to expand benefits. “But how you do it is less clear,” he said. “Getting murkier every minute.”

Some employers will probably retain companies like Tripp’s to manage the benefits for them. Match, the dating conglomerate, has partnered with Planned Parenthood Los Angeles, and all arrangements and information will be routed through that group. In a statement, Match also pledged to take steps to protect employees privacy, saying it will “fight all legal requests or subpoenas for any employee data or user data related to abortion or LGBTQIA+ rights.”

Some startups are broadening their offerings: California-based , a company that offers fertility care services, will aid its employer clients that want to expand access to abortion, .

That should solve some privacy problems, Tripp said. His company administers travel and paid time off for a range of procedures such as bariatric surgery and cancer treatment. A patient can claim those benefits through Tripp’s company, so the employer sees only aggregated information about the amounts paid for patients seeking care. That helps protect information from co-workers.

Still, there are several open questions, said Savage. Among them: How will an employee plan respond to requests from law enforcement? Will the U.S. Department of Health and Human Services’ Office for Civil Rights, which administers health privacy regulations, narrow the circumstances in which law enforcement can request data?

Currently, investigators and in certain emergencies.

In practice, the uncertainty may dissuade pregnant patients from claiming the benefit, said Larry Levitt, executive vice president for health policy at Â鶹ŮÓÅ. “There is no doubt that people being concerned about disclosing an abortion to their employers will limit how often this benefit will be used, even when it’s available,” he said.

That was the case even while Roe was the law of the land, when patients often elected to pay out-of-pocket, rather than rely on their insurance. “The employers offering these abortion benefits are by definition supportive of reproductive rights, but that doesn’t mean employees wouldn’t still want privacy when they or a family member are having an abortion,” Levitt said.

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At Spokane’s Mann-Grandstaff VA Medical Center, the records system — developed by Cerner Corp., based in North Kansas City, Missouri — went down. Staffers, inside the hospital and its outpatient facilities, were back to relying on pen and paper. Computerized schedules were inaccessible. Physicians couldn’t enter new orders or change patients’ medications.

By the next day, the electronic health records were only partially available. Dozens of records remained “sequestered,” meaning that doctors and nurses struggled to update patient charts.

The snafu, the latest in a series at Mann-Grandstaff, heightened Spokane medical staff members’ frustration with a system that has been problematic since it was installed a year and a half ago. The VA said no patients had been harmed because of the problems.

But physicians on the ground there said it’s only a matter of time before serious safety problems — those causing injury or death — emerge, pointing to the program’s ongoing weaknesses amid VA leadership’s full-bore push toward implementation nationwide. One provider said she was glad she didn’t have a relative in Mann-Grandstaff.

The one-two punch of a dangerous outage and staff grievances is the latest setback in the VA’s more than $16 billion effort to upgrade its record-keeping technology. The issues have at times forced clinicians to see fewer patients and file tens of thousands of requests for help to Cerner with patient-safety problems, congressional and agency watchdog reviews show.

If those issues multiply over the vast VA system — which employs more than a quarter-million workers and serves 6.3 million active patients — it could create rampant patient-safety and productivity problems. Despite the VA’s goals of using the technology upgrade to provide seamless records for patients from enlistment in the military until discharge, the doctors and clinicians who spoke to KHN are convinced that the problems experienced in Spokane will be repeated again and again.

The records system, scheduled for deployment at multiple VA facilities in the Pacific Northwest in the coming weeks and months, most recently rolled out at Jonathan M. Wainwright Memorial VA Medical Center in Walla Walla, Washington.

Both Cerner and Mann-Grandstaff officials declined to comment and referred KHN to officials at VA headquarters in Washington, D.C.

“If it’s a total meltdown” in Walla Walla, said Katie Purswell, the American Legion’s director of veterans affairs and rehabilitation, it’s a problem for the department and its decade-long initiative. Initial impressions from staffers are positive, but the issues in Spokane appeared over the course of weeks after the system was turned on.

The distress was particularly acute in early March. On March 2, Cerner turned on a software update to a database containing patient identification information. Problems emerged the next morning. In the record of a patient who was checking in for surgery, staff members discovered incorrect data, including gender information for a different patient. About an hour later, a staffer from the national VA’s medical records office told some clinicians at Mann-Grandstaff to “log out.”

Robert Fischer, Mann-Grandstaff’s medical center director, sent a dire warning later that morning. “Assume all electronic data is corrupted/inaccurate,” Fischer said in an email. He urged clinicians to limit orders for lab work, imaging studies, and medications. The facility shifted to “downtime procedures,” meaning a reliance on paper. 

Some staffers didn’t absorb the late-morning message and continued entering information in the mixed-up records, adding to the stew of erroneous data.

According to information provided to Congress later by the VA, Cerner had informed Mann-Grandstaff of a “complete degradation” the night before — leading to questions from staffers about why it took until late morning the next day to shut down the system. Agency spokesperson Erin Crowe told KHN there wasn’t any delay in notifying staff.

Problems stretched into the following week. Some records — 70 as of March 10, according to a briefing provided to Congress — remained unusable while auditors tried to ascertain what information had been mixed in from other charts. This left clinicians in some instances unable to keep track of patients’ care. Doctors said it became a confusing and chaotic environment. They couldn’t, for example, help patients refill prescriptions.

Members of Congress are concerned — not only about the outage but also VA’s explanations about it. In a letter to agency leadership, the leading Republicans on the House Veterans’ Affairs Committee and the subcommittee overseeing technology, Rep. Mike Bost of Illinois and Rep. Matt Rosendale of Montana, expressed worries the agency was “soft-pedal[ing]” its communications and argued that veterans were misled by assurances that records had been corrected.

The full committee plans to do a deeper examination soon. It has scheduled a closed-door roundtable with VA staffers from Spokane and Walla Walla on April 5.

The outage deepened unhappiness at Mann-Grandstaff. Clinicians there were already frazzled by a deeply buggy system. Downtime was common, a congressional aide told KHN.

A March 17 VA documented nearly 39,000 requests for technical help or improvement since the October 2020 deployment of the new records system. Cerner employees often closed requests without resolving the underlying problems, the report said. Mann-Grandstaff staffers became disengaged or devised shortcuts to bypass the malfunctioning software, the inspector general wrote — each a potential root of patient-safety incidents.

The department said the shortcuts — or workarounds — aren’t its policy. “Workarounds are not authorized nor encouraged,” Crowe said.

The Biden administration tried to overhaul the software initiative, putting the program on hiatus before installing new leadership in the medical records office at the end of 2021. But by then, low morale had sunk in. “People in Spokane VA are … demoralized and unhappy,” Rep. Frank Mrvan (D-Ind.), chair of the House subcommittee focused on the VA’s technology modernization programs, told agency leaders during a . He said staffers told him they felt as though they were beating their heads against a wall to make things function.

Other observers shared Mrvan’s concerns.

Purswell of the American Legion questioned whether appropriate steps are being taken to prepare the Walla Walla facility and its staff for the technology rollout. She asked whether staffers feel as if the Cerner system has been thrust upon them or are excited about the change.

Whether the VA has been persuasive about the benefits of the program is unclear. “I think it’s incumbent on us to demonstrate it’s not a loss,” said Dr. Terry Adirim, the leader of the VA office in charge of implementing the new records technology. “We might have dropped the ball on explaining what a benefit this is.”

Indeed, Adirim conducted a virtual town hall meeting March 21 for veterans in the Walla Walla area — where she was pressed about the problems in Spokane. “If Spokane has been a year figuring this out, why is this moving forward?” one questioner asked, expressing a point made frequently during the call. Adirim said the VA had made “thousands of changes” since the initial rollout.

Medical staffers at the Spokane and Walla Walla VA facilities are part of informal networks sharing their often-negative experiences about the program despite a perception among staff members that dissent will hurt their careers.

Adirim thinks negative feelings can be addressed by stepping up technical support. She also said training programs have been overhauled since the deployment in Spokane. Bottom line: The VA is proceeding.

“People want to revert back to what they did before,” Adirim said, but that’s not going to happen.

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Yet pooling data from the digital records systems in thousands of hospitals has proved a technical nightmare thus far. That’s largely because software built by rival technology firms often cannot retrieve and share information to help doctors judge which coronavirus treatments are helping patients recover.

“I’m stunned at EHR vendors’ inability to consistently pull data from their systems,” said Dale Sanders, chief technology officer of , a medical data analytics company. “It’s absolutely hampering our ability to understand and react to COVID.”

Over the past decade, federal officials have spent some $36 billion switching from paper to electronic health records, or EHRs, expecting, among other things, to harness volumes of medical data to reveal which treatments work best.

EHRs document every step doctors or other health care workers take in treating a COVID patient, from medicines prescribed to signs of progress or setbacks. Data collected from large numbers of patients could quickly yield answers about which treatments are succeeding.

But the pandemic is bringing into stark relief just how far the nation is from achieving the promised benefits, critics say.

Dr. Richard Cook, a research scientist and health care safety specialist, traces the data problems to missteps dating to the rollout of EHR, which began in earnest in 2009 and has been controversial ever since because commercial players produced ― and hospitals bought — systems that have proved more suited to billing than public health. “This was a boondoggle from the get-go, and the promoters knew it at the time,” Cook said.

Although some health systems are beginning to draw on EHR data to spot coronavirus trends and beneficial treatments, most health organizations around the country cannot readily do so.

“If we had a national database, we’d get a readout quickly about responses to [COVID-19] treatments,” said Dr. Eric Topol, director of the Scripps Research Translational Institute.

Medical researchers favor studies that test the efficacy of a drug in a formal clinical trial, and trials are underway for a variety of possible COVID-fighting medicines, including hydroxychloroquine. The results could take months or more, however, and doctors treating critically ill patients have few options in the meantime.

Topol said “real-world” evidence drawn from computerized records of COVID patients, while not as reliable as a clinical trial, is “still very useful” to help guide medical decisions.

Medical data has been hard to tease out because much of it resides in electronic “silos,” which government officials have not required technology companies to open up and eliminate.

“We’ll see piecemeal readouts of small numbers from individual health systems,” Topol said, but “don’t have the important data that we need.”

Sanders, whose firm is a member of the , a business-sponsored group promoting coronavirus data-sharing and analysis, said federal health officials lost precious time by failing to address this need as early as mid-January.

He said the federal Centers for Disease Control and Prevention, or CDC, should have devised a COVID data-collection plan using standardized terminology so hospitals with incompatible EHRs could compare notes on the fast-paced pandemic.

The CDC did not respond to written requests seeking comment. A spokesman for the Health and Human Services office that coordinates health information technology policy said: “This is a novel disease so the health care system did not know what data we needed to collect ― we are learning that the system needs to build out reporting information on multiple clinical features.”

Still, several of the top EHR manufacturers have joined the data-sharing coalition, which is pledging to at least partially fill the information void. The group has access to COVID data from about two dozen health systems and is expecting to add more.

“This is the first attempt at this that I’m aware of where inherently competitive EHR vendors have come together to work together with clinical researchers,” said Dr. Brian Anderson, chief digital health physician with the MITRE Corp., a nonprofit technology group that formed the coalition in late March.

Anderson said the coalition is “getting close” to being able to share some results from reports of treating people with convalescent plasma recovered from patients who have survived COVID-19. The group is also examining treatment data on the drug as it irons out some of the technical difficulties that complicated its analysis of hydroxychloroquine. Last week, the Food and Drug Administration that hydroxychloroquine could cause heart problems and should be used only in a hospital or clinical trial.

There are other signs the EHR industry is relaxing its grip on medical data in response to the emergency. Major EHR vendor Cerner Corp. has researchers access to some types of COVID-19 data, including “clinical complications and outcomes that could help drive important medical decisions.”

And some health systems have begun publishing data drawn from EHRs. One released this month, for instance, tracked the outcome of 5,700 coronavirus patients treated at 12 hospitals in a New York City health system and found that 88% of patients placed on ventilators had died. All the hospitals shared the same records vendor.

“In crisis, people seek data and authorities demand it,” said Cook, the health care safety specialist. But, he said, “it is not possible to build such a system on demand.”

Ross Koppel, a professor at the University of Pennsylvania and longtime EHR safety expert, said that the COVID-19 pandemic illustrates both “strengths and disappointments” of the digital systems.

While health systems using a single vendor have been able to pool data, Koppel said, the industry has battled regulators seeking to adopt common standards, a practice known as interoperability.

“That failure to mine these oceans of invaluable data reflects the power of the vendors to prevent government requirements for data standards and interoperability,” he said.

Limits in electronic data collection systems also are hindering COVID-19 public health and surveillance efforts.

Officials said they are sometimes required to manually fill out and fax some forms, wasting valuable time. Some information must be printed out from EHRs and reentered by public health authorities because it cannot be sent electronically.

Certain CDC , such as Person Under Investigation COVID case reports, can take up to 30 minutes to complete. Other forms exchanged between hospitals and laboratories often are missing critical information, leading to delays in contacting patients and identifying people they had close contact with. In some states, demographic information on race and ethnicity is missing 85% of the time, and patients’ addresses, half the time, according to Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.

“We’re using yesterday’s technology for the biggest public health emergency in our lifetimes,” Hamilton said. “COVID has demonstrated for people what we’ve known all along. You can’t leave public health at the end of the line.”

The government’s health IT chief says a new administrative to promote interoperability and bar EHR manufacturers from impeding the flow of information will take time to change behavior.

“If this were to have happened three or four years in the future when we have interoperability … we would be in a much better spot here. But unfortunately, that’s not quite the case, but we’re still keeping our work going,” Donald Rucker, national coordinator for health information technology, said during an April 15 virtual .

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Instead of typing on her computer keyboard during the exam, Urban’s primary care physician at the practice in Media, Pennsylvania, had an ambient artificial intelligence scribe take notes. At the end of the 30-minute visit, Urban’s doctor showed her the AI summary of the appointment, neatly organized into sections for her medical history, the physical exam findings, and an assessment and treatment plan for her rheumatoid arthritis and hot flashes, among other details.

The clinical note, which Urban could also review on the patient portal at home, was incredibly thorough, she said. It summarized all of her questions and concerns and the doctor’s responses. The scribe “made sure we didn’t miss anything,” Urban said.

Ambient AI scribes are being hailed by physicians as a game changer that helps free them to focus on their patients rather than their computer keyboard. By releasing doctors from the onerous and time-consuming task of documenting what happens during every patient encounter, , AI scribes may help reduce physician burnout and after-hours “pajama time” catching up on work in the evening.

The potential of AI to transform every aspect of the health care system — from patient care to clinical efficiency to medical innovation — is an area of intense focus, including by the Trump administration.

Last January, President Donald Trump issued an to remove barriers to American leadership in AI. Later in the year, a from the federal Department of Health and Human Services invited stakeholders to weigh in on how the department can accelerate the adoption of AI in health care.

Several startup vendors in recent years have introduced ambient AI scribe products that can be integrated into electronic health records. EHR market leader Epic is technology, which it expects to release widely early this year, according to , a family medicine physician who is chief medical officer and vice president of clinical informatics at Epic.

Health tech experts estimate that a third of providers have access to ambient AI scribe technology. As adoption looks likely to grow rapidly over the next few years, many expect it to become more of a recruiting tool, a minimum requirement for incoming clinicians, who are increasingly prioritizing work-life balance.

“It’s part of keeping doctors happy,” said , a professor and the chair of the Department of Medicine at the University of California-San Francisco, whose forthcoming book, , explores how AI is transforming health care. “Health systems that initially might have done a hard-nosed return-on-investment calculation — many are softening on that and realizing that the cost of recruiting and retaining doctors is pretty high.”

But many questions remain. Does the use of ambient AI scribes improve patient care and health outcomes? Will doctors use time they gain by employing an AI scribe to improve the quality of the time they spend with their patients or just boost the number of patients they see? To what extent will expanding the amount of detail available from a patient visit lead to bigger bills if the AI scribe is integrated with a coding app that optimizes provider charges?

For now, these questions remain mostly unanswered.

Urban said that the AI scribe didn’t change her experience as a patient very much. Typically, after a patient gives verbal permission, the AI scribe records the visit on a phone and organizes the conversation into the structure of a clinical note, filtering out small talk that isn’t pertinent to the medical visit but incorporating relevant details about a family member’s recent cancer diagnosis, for example. The scribe’s note is often then integrated into the provider’s EHR. The doctor later reviews the note and signs off on it.

Even though the visit may not feel very different to patients, some clinicians report that ambient AI scribes are changing patient encounters in unanticipated ways.

“Now, when I’m doing a physical exam, I have to say what I’m doing and what I’m finding out loud in order for the AI scribe to document it,” said , Urban’s primary care doctor. “People find that very interesting,” she said.

When Capalongo places her stethoscope over the carotid artery under a patient’s jaw, for example, she might say that she doesn’t hear a “bruit,” or vascular murmur, whose presence could indicate atherosclerosis. Patients have told her, “I never knew why a doctor would listen there,” she said.

Saying things out loud for the AI scribe that would typically appear only in a clinical note can create its own set of challenges, particularly during sensitive physical exams. Doctors may feel it’s important to adjust their conversation accordingly.

“Sometimes patients are anxious and scared and my saying things that they don’t understand or they may worry about during an uncomfortable examination does not help the situation and honestly is insensitive to what the patient is going through,” said , a professor in the Division of Colon and Rectal Surgery at the University of Minnesota, who is also chief health informatics and AI officer at Fairview Health Services in Minneapolis. “I’ll keep that top of mind and make sure I record it” after the visit.

“How we have conversations with patients about these tools is really important, in particular for maintaining trust and ensuring accurate information,” Melton-Meaux said.

Studies have found that, across a range of measures such as completeness, timeliness, and coherence, the notes created by ambient AI scribes are generally at least as good as, and sometimes better than, traditional documentation, said , a pediatrician who is vice president for applied informatics at the University of Pennsylvania Health System.

An ongoing concern is around AI “hallucinations,” in which false, sometimes fabricated information appears in an AI output.

Kaiser Permanente, an of ambient AI scribe technology, provides it to more than 25,000 doctors, advanced practice providers, and pharmacists systemwide. It has found hallucinations to be “quite rare,” said , an internist who is vice president of AI and emerging technologies at KP.

But they happen. An AI-scribe-generated note, for instance, might say that the doctor planned to refer someone to a neurologist or to follow up in two weeks. The problem? The doctor might not have said that.

“The technology is not perfect, and that’s why physicians are reviewing it,” Yang said. It’s learning from regular physician visits as it goes, he said. That’s why having a person check the work product is critical.

Still, even such a “human-in-the loop” system is fraught, Wachter said. “Humans stink at maintaining vigilance over time,” he said.

As the use of ambient AI scribes becomes routine, some clinicians worry that the technology will widen the divide between health care haves and have-nots.

Large health systems are able to move forward with the technology, Melton-Meaux said. But what about critical access hospitals or small private practices? “There need to be more resources,” she said.

Physicians’ enthusiasm for ambient AI scribes stands in sharp contrast to their negative reaction to electronic health record systems that have become widely adopted in recent years to replace paper charts.

“During the last 10 years, when EHRs became a thing, we all became very grumpy, overworked data scribes,” Wachter said.

The introduction of AI scribes makes physicians feel like technology is working for them rather than the other way around, health care AI experts said.

And AI scribes are “training wheels” for more consequential adoption of AI in health care, Wachter said.

To improve health care value and save costs, Wachter said, we need a system that makes it more likely that physicians will practice evidence-based medicine to order the right tests and prescribe the right medications.

“It’s a few years away, but it’s all AI-dependent,” he said.

Epic has introduced roughly 60 AI use cases for patients, clinicians, and administration, with over 100 more in the works.

“It’s so much bigger than a scribe,” said Epic’s Gerhart. “It’s literally listening and acting in a way that tees things up for me so that I can take action.”

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U.S. Immigration and Customs Enforcement agents have also shown up at community clinics. Health providers say that officers have tried to hosting a mobile clinic, waved a machine gun in the faces of clinicians serving the homeless, and hauled a passerby into an unmarked car outside a community health center.

In response to such immigration enforcement activity in and around clinics and hospitals, Democratic Gov. Gavin Newsom last month signed , which prohibits medical establishments from allowing federal agents without a valid search warrant or court order into private areas, including places where patients receive treatment or discuss health matters.

But while the bill received broad support from medical groups, health care workers, and immigrant rights advocates, legal experts say California can’t stop federal authorities from carrying out duties in public places, which include hospital lobbies and general waiting areas, health facility parking lots, and surrounding neighborhoods — places where recent ICE activities have sparked outrage and fear. Previous federal restrictions on immigration enforcement in or near sensitive areas, including health care establishments, were rescinded by the Trump administration in January.

“The issue that states encounter is the ,” said , a supervising attorney and clinical teaching fellow at Georgetown Law. She said the federal government does have the right to conduct enforcement activities, and there are limits to what the state can do to stop them.

California’s law designates a patient’s immigration status and birthplace as protected information, which like medical records cannot be disclosed to law enforcement without a warrant or court order. And it requires health care facilities to have clear procedures for handling requests from immigration authorities, including training staff to immediately notify a designated administrator or legal counsel if agents ask to enter a private area or review patient records.

Several other Democratic-led states have also taken up legislation to protect patients at hospitals and health centers. In May, Colorado Gov. Jared Polis signed the bill, which penalizes hospitals for unauthorized sharing of information about people in the country illegally and bars ICE agents from entering private areas of health care facilities without a judicial warrant. In Maryland, requiring the attorney general to create guidance on keeping ICE out of health care facilities went into effect in June. New Mexico has instituted , and Rhode Island has from asking patients about their immigration status.

Republican-led states have aligned with federal efforts to prevent health care spending on immigrants without legal authorization. Such immigrants are not eligible for comprehensive Medicaid coverage, but states do bill the federal government for in certain cases. Under a , Florida requires hospitals that accept Medicaid to ask about a patient’s legal status. In Texas, hospitals now have to report how much they spend on care for immigrants without legal authorization.

“Texans should not have to shoulder the burden of financially supporting medical care for illegal immigrants,” Gov. Greg Abbott said in issuing his last year.

California’s efforts to rein in federal enforcement come as the state, where more than a quarter of residents , has become a target of President Donald Trump’s immigration crackdown. Newsom signed SB 81 as part of a prohibiting immigration agents from entering schools without a warrant, requiring law enforcement officers to identify themselves, and banning officers from wearing masks. SB 81 was passed on a party-line vote with no formal opposition.

“We’re not North Korea,” Newsom said during a September bill-signing ceremony. “We’re pushing back against these authoritarian tendencies and actions of this administration.”

Some supporters of the bill and legal experts said California’s law can prevent ICE from violating existing patient privacy rights. Those include the Fourth Amendment, which without a warrant in places where people have a reasonable expectation of privacy. Valid warrants must be . But ICE agents frequently use administrative warrants to try to gain access to private areas they don’t have the authority to enter, Genovese said.

“People don’t always understand the difference between an administrative warrant, which is a meaningless piece of paper, versus a judicial warrant that is enforceable,” Genovese said. Judicial warrants are rarely issued in immigration cases, she added.

The Department of Homeland Security has said or identification requirements for law enforcement officers, slamming them as unconstitutional. The department did not respond to a request for comment on the state’s new rules for health care facilities, which went into immediate effect.

Tanya Broder, a senior counsel with the National Immigration Law Center, said immigration arrests at health care facilities appear to be relatively rare. But the federal decision to rescind protections around sensitive areas, she said, “has generated fear and uncertainty across the country.” Many of the most high-profile news reports of immigration agents at health care facilities have been in California, largely involving detained patients brought in for care.

The California Nurses Association, the state’s largest nurses union, was a co-sponsor of the bill and raised concerns about the treatment of Milagro Solis-Portillo, a 36-year-old Salvadoran woman who was under round-the-clock ICE surveillance at Glendale Memorial Hospital over the summer.

Union leaders also of agents at California Hospital Medical Center south of downtown Los Angeles. According to Anne Caputo-Pearl, a labor and delivery nurse and the chief union representative at the hospital, agents brought in a patient on Oct. 21 and remained in the patient’s room for almost a week. The reported that a TikTok streamer, Carlitos Ricardo Parias, was taken to the hospital that day after he was wounded during an immigration enforcement operation in South Los Angeles.

The presence of ICE was intimidating for nurses and patients, Caputo-Pearl said, and prompted visitor restrictions at the hospital. “We want better clarification,” she said. “Why is it that these agents are allowed to be in the room?”

Hospital and clinic representatives, however, said they are already following the law’s requirements, which largely reinforce put out by state Attorney General Rob Bonta in December.

Community clinics throughout Los Angeles County, which serve over 2 million patients a year, including a large portion of immigrants, have been implementing the attorney general’s guidelines for months, said Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County. But she said the law should help ensure uniform standards across health facilities that clinics refer out to and reassure patients that procedures are in place to protect them.

Still, it can’t prevent immigration raids from happening in the broader community, which have made some patients and even health workers afraid to venture outside, McCarthy said. Some incidents have occurred near clinics, including an arrest of a passerby outside a clinic in East Los Angeles, which a security guard caught on video, she said.

“We’ve had clinic staff say, ‘Is it safe for me to go out?’” she said.

At St. John’s Community Health, a network of 24 community health centers and five mobile clinics in South Los Angeles and the Inland Empire, CEO Jim Mangia agreed that the new law can’t prevent all immigration enforcement activity, but he said it does give clinics a tool to push back if agents show up, something his staff has already had to do.

Mangia said St. John’s staff had two encounters with immigration agents over the summer. In one, he said, staff stopped armed officers from entering a gated parking lot at a drug and alcohol recovery center where doctors and nurses were seeing patients at a mobile health clinic.

Another occurred in July, when immigration agents MacArthur Park on horses and in armored vehicles, in a show of force by the Trump administration. Mangia said masked officers in full tactical gear surrounded a street medicine tent where St. John’s providers were tending to homeless patients, screamed at staff to get out, and pointed a gun at them. The providers were so shaken by the episode, Mangia said, that he had to bring in mental health professionals to help them feel safe going back out on the street.

A DHS spokesperson told CalMatters that in the rare instance where agents enter certain sensitive locations, officers would need “.”

Since then, St. John’s has doubled down on providing support and training to staff and has offered patients afraid to go out the option of home medical visits and grocery deliveries. Patient fears and ICE activity have decreased since the summer, Mangia said, but with DHS planning to , he doubts that will last.

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“The frustration with IMPACT is well known,” said , a Democrat from Houston, referring to the aging software.

That frustration, he added, is felt widely, from caseworkers to the court system, and boils down to a simple reality: , has been in place since 1996. It was designed to be a secure location for foster children’s records, including their health records and histories of neglect and abuse. But it doesn’t allow such information to be easily added by or shared among state and local health agencies, Medicaid, and even health care providers for the foster children in Texas’ care. Without that ability, children’s medical needs are getting lost in transit. After all, foster kids tend to move from place to place, home to home, and doctor to doctor.

A by court-appointed monitors is full of harrowing stories and frightening missteps. For instance, in January 2022, a residential treatment center lost track of a 16-year-old boy’s medications. The supply ran out but the center “didn’t realize it.” The boy, who had a history of suicidal ideation, had to undergo an emergency psychiatric consult.

The report also told the story of a foster child who had to stay in a Dallas hotel because caseworkers were unable to find her a family. But no one knew she had prescription drugs in her backpack. When she was left alone in her room, she swallowed a handful of pills. She was taken to a behavioral hospital. As of last September, she was in juvenile detention.

Such accounts, and the concerns they trigger about the state’s broken foster care system, have begun to find traction this legislative session.

The state’s Department of Family and Protective Services, for instance, which oversees the system, has been called in for a series of status hearings regarding its overall progress. Those involved say lasting improvement has to start with modernizing DFPS’ technological infrastructure, but whether their pleas will be met with action is unclear.

Making matters more frustrating for caseworkers is that the federal government in 2015 introduced a new set of regulatory requirements. States could use them to build a framework and become part of a that, from the federal view, would help states better track foster kids and their health care needs. Texas, however, is one of four states that has so far opted against using it.

The state now finds itself in the unprecedented situation of having a budget , and DFPS is bidding to snag some of that windfall. During an appropriations meeting in February, commissioner said that priorities for any such allocation would include building community-based care teams and increasing pay to boost employee retention. The department isn’t planning to replace or make sweeping changes to IMPACT anytime soon.

That’s despite the fact that IMPACT is older than Google — and has had far fewer updates.

Marissa Gonzales, DFPS media relations director, said that when states were given the option to adopt the new federal standards — which incorporated modern technology to enable data to be shared between systems — the agency opted out because they found the requirements “quite restrictive.” On the table now, however, is a federal offer to cover half the cost of transitioning, she said, adding that the agency is “talking to other states about their experiences, and evaluating our own needs, before deciding next steps.”

According to a and the Texas Alliance of Child and Family Services, transitioning to the new program would cost the state $80 million. It said the state had already spent more than $80 million since 2015 to maintain its current system.

One of the biggest concerns of caseworkers is that IMPACT isn’t capable of supporting data-sharing, also known as interoperability, and flagging potential problems, such as when doctors separately prescribe medications that are dangerous when taken together. This is critical, because foster children are prescribed psychotropic drugs to treat mental health disorders at of other children on Medicaid.

But without such a safety net, the responsibility falls to the caseworker.

“You wouldn’t really expect a CPS worker to have advanced knowledge of psychotropic medications” and which ones children can and cannot take together safely, said Tara Green, co-founder and executive director of the in Houston. But caseworkers have saved children’s lives by catching dangerous medication pairings, she said.

On several occasions, Green said, a caseworker has raised a concern about a child’s medications and a psychiatrist has confirmed that if the issue wasn’t caught then, “this kid would have had a heart attack in the next week or so.”

in the past few years have died while in the state’s care, with most of the deaths attributed to preexisting medical conditions — disorders that, more often than not, require specialized care and treatments.

Asked during a House committee hearing about the timing of a modernization project, Muth seemed to suggest it would be a longer-range fix. “It would not be a process that takes a biennium or two, and you’d have to plan for that,” she said. “So, I still think we’re talking about down the road.”

But Wu told Â鶹ŮÓÅ Health News that putting off even starting such an upgrade will make things worse. The system will “probably already be out-of-date” by the time it’s ready, he said. That’s why “it always feels like we’re in a catch-up mode,” he added.

As it stands, caseworkers have heavy client loads and spend much of their day driving to visits with children who are scattered across counties. But IMPACT isn’t accessible on their mobile devices. That means they often end up transferring paper notes into the program when they return to the office. On top of that, it takes several steps to make a single entry, and the system is prone to freezing.

“All the data that we’re relying on to tell us about the lives of these kids, it has to be taken with a grain of salt,” said , the supervising attorney of ’ foster care team. “Your data is only as good as the ability of the caseworker to keep up with all of that, and they’re trying to juggle so many things.”

Texas’ foster system has been under intense pressure since a federal lawsuit was filed against it in 2011 for “leaving many thousands of children to be harmed while in the state’s care,” the . U.S. District Judge Janis Graham Jack wrote in a scathing that the system “shocks the conscience.” More recently, during a January status hearing, Jack scolded the foster care agency, saying children “come into your care with great needs. I just don’t want them going out of your care with even greater needs, which is what has been happening.”

As part of her ruling, Jack ordered a list of corrections the state agency must make, including hiring more caseworkers to reduce caseloads, stopping the placing of children in foster group homes that lack 24-hour supervision, and tracking child-on-child abuse.

In the eight years since, some progress has been made. For instance, according to the state, , from a per caseworker in 2015 — which exceeded the per worker — to a daily average of 11 at the beginning of 2023.

But caseworkers say updating the foster care system’s technology would provide overall support for the care children receive, rather than placing band-aids on issues.

The new records system would “make it easier to track everything about that kid,” said , the policy and advocacy manager at Texas 2036, since a variety of agencies would have access to that child’s data, and the “more eyes on that kid, the better.”

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Medicare had paid the Blue Cross plan more than $20,000 to cover the care of 11 patients seen by Aggeus Healthcare, a chain of podiatry clinics, in 2011.

Blue Cross said it couldn’t locate any records to justify the payments because Aggeus shut down in the wake of the indictment, which included charges of falsifying patient medical files. So Blue Cross asked the Centers for Medicare & Medicaid Services for a “hardship” exemption to a strict requirement that health plans retain these files in the event of an audit.

CMS granted the request and auditors removed the 11 patients from a random sample of 201 Blue Cross plan members whose records were reviewed.

A review of 90 government audits, released exclusively to KHN in response to a Freedom of Information Act lawsuit, reveals that health insurers that issue Medicare Advantage plans have repeatedly tried to sidestep regulations requiring them to document medical conditions the government paid them to treat.

The audits, the most recent ones the agency has completed, sought to validate payments to Medicare Advantage health plans for 2011 through 2013.

As , auditors uncovered millions of dollars in improper payments — citing overcharges of more than $1,000 per patient a year on average — by nearly two dozen health plans.

The hardship requests, together with other documents obtained by KHN through the lawsuit, shed light on the secretive audit process that Medicare relies on to hold accountable the increasingly popular — which are an alternative to original Medicare and primarily run by major insurance companies.

Reacting to the audit findings, Sen. Chuck Grassley (R-Iowa) called for “aggressive oversight” to recoup overcharges.

“CMS must aggressively use every tool at its disposal to ensure that it’s efficiently identifying Medicare Advantage fraud and working with the Justice Department to prosecute and recover improper payments,” Grassley said in a written statement to KHN.

Medicare reimburses Medicare Advantage plans using a complex formula called a risk score that computes higher rates for sicker patients and lower ones for healthier people.

But federal officials rarely demand documentation to verify that patients have these conditions, or that they are as serious as claimed. Only about 5% of Medicare Advantage plans are audited yearly.

When auditors came calling, the previously hidden CMS records show, they often found little or no support for diagnoses submitted by the Advantage plans, such as chronic obstructive pulmonary disease, diabetes, or vascular disease. Though auditors look at the records of a relatively small sample of patients, they can extrapolate the error rate to the broad population of patients in the Medicare Advantage health plan and calculate millions of dollars in overpayments.

Overall, CMS auditors flagged diagnostic billing codes — which show what patients were treated for — as invalid more than 8,600 times. The audits covered records for 18,090 patients over the three-year period.

In many cases, auditors found that the medical credentials of the health care provider who made the diagnosis were unclear, the records provided were unacceptable, or the record lacked a signature as required. Other files bore the wrong patient’s name or were missing altogether.

The rates of billing codes rejected by auditors varied widely across the 90 audits. The rate of invalid codes topped 80% at Touchstone Health, a defunct New York HMO, according to CMS records. The company also was shown to have the highest average annual overcharges — $5,888 per patient billed to the government.

By contrast, seven health plans had fewer than 10% of their codes flagged.

Registering Excuses

One Medicare Advantage health plan submitted 57 hardship requests, more than any other insurer, though CMS approved only six. In three cases, the health plans said the records were destroyed in floods. Another cited a warehouse fire, and two said the records couldn’t be turned over because a doctor had been convicted for his role in illegally distributing millions of oxycodone pills through his network of pain clinics.

Other Medicare Advantage health plans argued they had no luck retrieving medical records from doctors who had moved, retired, died — and in some cases been arrested or lost their licenses for misconduct.

CMS found most excuses wanting, telling health plans they granted exceptions only in “truly extraordinary circumstances.” CMS said it receives about 100 of these requests for each year it audits and approves about 20% of them.

The Medicare Advantage plan issued by Minnesota Blue Cross won its appeal after it relied on Aggeus Healthcare for diagnoses of vascular disease for 11 of its patients who got podiatry care.

Dr. Yev Gray, a Chicago podiatrist who owned the Aggeus chain that operated in more than a dozen states, was indicted on federal fraud charges in Missouri in October 2015.

The indictment accused him of creating an electronic medical record that fraudulently added billing codes for treatment of medical conditions patients didn’t necessarily have, including vascular disease.

Gray pleaded guilty in May 2017 to charges of conspiracy to defraud the United States and making false statements related to health care matters. He was sentenced to 90 months in prison.

Blue Cross said it “terminated” its network agreements with Aggeus about two weeks after learning of the indictment. Jim McManus, director of public relations for Blue Cross and Blue Shield of Minnesota, had no comment on the case but said the insurer “is committed to investigating credible cases of fraud, waste, and abuse.”

Dara Corrigan, a CMS deputy administrator, said that as a “general matter,” its Medicare Advantage audits “are not designed to detect fraud, nor are they intended to identify all improper diagnosis submissions.”

Protecting Taxpayers

The costs to taxpayers from improper payments have mushroomed over the past decade as plans. CMS has estimated the total overpayments to health plans for the 2011-2013 audits at $650 million, yet how much it will eventually claw back remains unclear.

Payment errors continue to be a drain on the government program. CMS has estimated to Medicare Advantage plans triggered by unconfirmed medical diagnoses at $11.4 billion for 2022.

“This isn’t a partisan issue,” said Sen. Sherrod Brown (D-Ohio). “I’ve requested a plan from CMS as to how they plan to recoup these taxpayer-funded overpayments and prevent future overbilling.”

Leslie Gordon, an acting director of health care for the Government Accountability Office, said CMS needs to speed up the audit and appeals process to get quicker results.

“That is money that should be recovered,” Gordon told KHN.

As Medicare Advantage faces mounting criticism from government watchdogs and in Congress, the industry has tried to rally seniors to its side while disputing audit findings and research that asserts the program .

AHIP, an insurance industry trade group, on the newly released audits as “misleading,” while the pro-industry group said the audits were “in some cases, more than a decade old.”

Jeff De Los Reyes, a senior vice president at GHG Advisors health care consulting group, said he believes the health plans have improved their documentation in recent years. But, he said, “coding is never 100% perfect and there will be errors despite the best of intentions.”

Rep. Katie Porter, a Democrat from Southern California and a critic of Medicare Advantage, countered: “When big insurance bills taxpayers for care it never intends to deliver, it is stealing our tax dollars.”

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But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said , executive director of the .

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson . That is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” , a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with and routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said , director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said , a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

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KHN correspondent Darius Tahir discussed the latest developments related to the federal “Cancer Moonshot” initiative on Houston Public Media’s “Town Square With Ernie Manouse” on Oct. 4. Tahir also discussed how bias can be embedded in medical records on America’s Heroes Group’s “Roundtable” on Oct. 1.

• Read Tahir’s “Embedded Bias: How Medical Records Sow Discrimination”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The History of One’s Medical History

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

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

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

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

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

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

New Technology — Same Biases?

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

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

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

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

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

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

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

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

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

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

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

Conflicts Ahead?

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

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

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

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

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

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

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

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Experts warn that simply claiming the benefits may create paper trails for law enforcement officials in states criminalizing abortion.

“How will law enforcement react to health-related travel, and how will employers respond to that?” are just two of the questions that lawyers are asking themselves, said , a former Obama administration official and the current chief privacy officer for , a California startup that helps people manage chronic conditions, like hypertension and prediabetes.

Some regulations — like the Health Insurance Portability and Accountability Act, which governs health privacy; and other insurance laws — protect some parts of a patient’s private life. Human resources departments are required to keep some medical data closely held, but a determined law enforcement agent with a search warrant or subpoena could ultimately get access to patient data.

That will complicate life for the dozens of corporations promising to protect, or even expand, the abortion benefits for employees and their dependents.

A KHN review of publicly available statements identified at least 114 companies that had pledged to maintain abortion benefits or to expand benefits by offering paid time off or reimbursements for travel and lodging expenses so employees or dependents can obtain an abortion. They include some of the biggest, most prominent corporations in the U.S. For example, 54 of the companies — including Starbucks, Bank of America, and California-based Disney and Apple — are in the Fortune 500.

But some companies were reticent to describe what steps they’re taking to protect employees’ privacy. Only 28 firms replied to KHN inquiries about their confidentiality policies. Most declined to comment. “We don’t have anything to share beyond our statement,” said Erin Rolfes, a spokesperson for Kroger, which has supermarkets in . Microsoft spokesperson Amanda Devlin also declined to share information about how employees would claim reimbursements.

Others were slightly more specific about how their benefits would be administered. Ulta Beauty spokesperson Eileen Ziesemer said the Illinois-based company’s abortion benefits would be managed by its “health care plan and internal systems.”

Asked whether those internal systems would be vulnerable to a subpoena or search warrant, she said, “Given that each state will be implementing the Supreme Court’s decision to overturn Roe v. Wade and state-by-state laws are rapidly evolving, we are unable to comment on potential impacts at this time.”

Observers agreed that how companies will deal with the privacy implications of extending abortion benefits is uncertain.

“They’re all trying to build this bicycle while they’re riding it,” said , director of corporate engagement at , a nonprofit investor in reproductive and maternal health companies.

Employers are “going to try and take a punt on privacy,” predicted , CEO of San Francisco-based , a startup that offers navigation services and virtual care for employers. Many companies clearly intend to expand benefits. “But how you do it is less clear,” he said. “Getting murkier every minute.”

Some employers will probably retain companies like Tripp’s to manage the benefits for them. Match, the dating conglomerate, has partnered with Planned Parenthood Los Angeles, and all arrangements and information will be routed through that group. In a statement, Match also pledged to take steps to protect employees privacy, saying it will “fight all legal requests or subpoenas for any employee data or user data related to abortion or LGBTQIA+ rights.”

Some startups are broadening their offerings: California-based , a company that offers fertility care services, will aid its employer clients that want to expand access to abortion, .

That should solve some privacy problems, Tripp said. His company administers travel and paid time off for a range of procedures such as bariatric surgery and cancer treatment. A patient can claim those benefits through Tripp’s company, so the employer sees only aggregated information about the amounts paid for patients seeking care. That helps protect information from co-workers.

Still, there are several open questions, said Savage. Among them: How will an employee plan respond to requests from law enforcement? Will the U.S. Department of Health and Human Services’ Office for Civil Rights, which administers health privacy regulations, narrow the circumstances in which law enforcement can request data?

Currently, investigators and in certain emergencies.

In practice, the uncertainty may dissuade pregnant patients from claiming the benefit, said Larry Levitt, executive vice president for health policy at Â鶹ŮÓÅ. “There is no doubt that people being concerned about disclosing an abortion to their employers will limit how often this benefit will be used, even when it’s available,” he said.

That was the case even while Roe was the law of the land, when patients often elected to pay out-of-pocket, rather than rely on their insurance. “The employers offering these abortion benefits are by definition supportive of reproductive rights, but that doesn’t mean employees wouldn’t still want privacy when they or a family member are having an abortion,” Levitt said.

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At Spokane’s Mann-Grandstaff VA Medical Center, the records system — developed by Cerner Corp., based in North Kansas City, Missouri — went down. Staffers, inside the hospital and its outpatient facilities, were back to relying on pen and paper. Computerized schedules were inaccessible. Physicians couldn’t enter new orders or change patients’ medications.

By the next day, the electronic health records were only partially available. Dozens of records remained “sequestered,” meaning that doctors and nurses struggled to update patient charts.

The snafu, the latest in a series at Mann-Grandstaff, heightened Spokane medical staff members’ frustration with a system that has been problematic since it was installed a year and a half ago. The VA said no patients had been harmed because of the problems.

But physicians on the ground there said it’s only a matter of time before serious safety problems — those causing injury or death — emerge, pointing to the program’s ongoing weaknesses amid VA leadership’s full-bore push toward implementation nationwide. One provider said she was glad she didn’t have a relative in Mann-Grandstaff.

The one-two punch of a dangerous outage and staff grievances is the latest setback in the VA’s more than $16 billion effort to upgrade its record-keeping technology. The issues have at times forced clinicians to see fewer patients and file tens of thousands of requests for help to Cerner with patient-safety problems, congressional and agency watchdog reviews show.

If those issues multiply over the vast VA system — which employs more than a quarter-million workers and serves 6.3 million active patients — it could create rampant patient-safety and productivity problems. Despite the VA’s goals of using the technology upgrade to provide seamless records for patients from enlistment in the military until discharge, the doctors and clinicians who spoke to KHN are convinced that the problems experienced in Spokane will be repeated again and again.

The records system, scheduled for deployment at multiple VA facilities in the Pacific Northwest in the coming weeks and months, most recently rolled out at Jonathan M. Wainwright Memorial VA Medical Center in Walla Walla, Washington.

Both Cerner and Mann-Grandstaff officials declined to comment and referred KHN to officials at VA headquarters in Washington, D.C.

“If it’s a total meltdown” in Walla Walla, said Katie Purswell, the American Legion’s director of veterans affairs and rehabilitation, it’s a problem for the department and its decade-long initiative. Initial impressions from staffers are positive, but the issues in Spokane appeared over the course of weeks after the system was turned on.

The distress was particularly acute in early March. On March 2, Cerner turned on a software update to a database containing patient identification information. Problems emerged the next morning. In the record of a patient who was checking in for surgery, staff members discovered incorrect data, including gender information for a different patient. About an hour later, a staffer from the national VA’s medical records office told some clinicians at Mann-Grandstaff to “log out.”

Robert Fischer, Mann-Grandstaff’s medical center director, sent a dire warning later that morning. “Assume all electronic data is corrupted/inaccurate,” Fischer said in an email. He urged clinicians to limit orders for lab work, imaging studies, and medications. The facility shifted to “downtime procedures,” meaning a reliance on paper. 

Some staffers didn’t absorb the late-morning message and continued entering information in the mixed-up records, adding to the stew of erroneous data.

According to information provided to Congress later by the VA, Cerner had informed Mann-Grandstaff of a “complete degradation” the night before — leading to questions from staffers about why it took until late morning the next day to shut down the system. Agency spokesperson Erin Crowe told KHN there wasn’t any delay in notifying staff.

Problems stretched into the following week. Some records — 70 as of March 10, according to a briefing provided to Congress — remained unusable while auditors tried to ascertain what information had been mixed in from other charts. This left clinicians in some instances unable to keep track of patients’ care. Doctors said it became a confusing and chaotic environment. They couldn’t, for example, help patients refill prescriptions.

Members of Congress are concerned — not only about the outage but also VA’s explanations about it. In a letter to agency leadership, the leading Republicans on the House Veterans’ Affairs Committee and the subcommittee overseeing technology, Rep. Mike Bost of Illinois and Rep. Matt Rosendale of Montana, expressed worries the agency was “soft-pedal[ing]” its communications and argued that veterans were misled by assurances that records had been corrected.

The full committee plans to do a deeper examination soon. It has scheduled a closed-door roundtable with VA staffers from Spokane and Walla Walla on April 5.

The outage deepened unhappiness at Mann-Grandstaff. Clinicians there were already frazzled by a deeply buggy system. Downtime was common, a congressional aide told KHN.

A March 17 VA documented nearly 39,000 requests for technical help or improvement since the October 2020 deployment of the new records system. Cerner employees often closed requests without resolving the underlying problems, the report said. Mann-Grandstaff staffers became disengaged or devised shortcuts to bypass the malfunctioning software, the inspector general wrote — each a potential root of patient-safety incidents.

The department said the shortcuts — or workarounds — aren’t its policy. “Workarounds are not authorized nor encouraged,” Crowe said.

The Biden administration tried to overhaul the software initiative, putting the program on hiatus before installing new leadership in the medical records office at the end of 2021. But by then, low morale had sunk in. “People in Spokane VA are … demoralized and unhappy,” Rep. Frank Mrvan (D-Ind.), chair of the House subcommittee focused on the VA’s technology modernization programs, told agency leaders during a . He said staffers told him they felt as though they were beating their heads against a wall to make things function.

Other observers shared Mrvan’s concerns.

Purswell of the American Legion questioned whether appropriate steps are being taken to prepare the Walla Walla facility and its staff for the technology rollout. She asked whether staffers feel as if the Cerner system has been thrust upon them or are excited about the change.

Whether the VA has been persuasive about the benefits of the program is unclear. “I think it’s incumbent on us to demonstrate it’s not a loss,” said Dr. Terry Adirim, the leader of the VA office in charge of implementing the new records technology. “We might have dropped the ball on explaining what a benefit this is.”

Indeed, Adirim conducted a virtual town hall meeting March 21 for veterans in the Walla Walla area — where she was pressed about the problems in Spokane. “If Spokane has been a year figuring this out, why is this moving forward?” one questioner asked, expressing a point made frequently during the call. Adirim said the VA had made “thousands of changes” since the initial rollout.

Medical staffers at the Spokane and Walla Walla VA facilities are part of informal networks sharing their often-negative experiences about the program despite a perception among staff members that dissent will hurt their careers.

Adirim thinks negative feelings can be addressed by stepping up technical support. She also said training programs have been overhauled since the deployment in Spokane. Bottom line: The VA is proceeding.

“People want to revert back to what they did before,” Adirim said, but that’s not going to happen.

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Yet pooling data from the digital records systems in thousands of hospitals has proved a technical nightmare thus far. That’s largely because software built by rival technology firms often cannot retrieve and share information to help doctors judge which coronavirus treatments are helping patients recover.

“I’m stunned at EHR vendors’ inability to consistently pull data from their systems,” said Dale Sanders, chief technology officer of , a medical data analytics company. “It’s absolutely hampering our ability to understand and react to COVID.”

Over the past decade, federal officials have spent some $36 billion switching from paper to electronic health records, or EHRs, expecting, among other things, to harness volumes of medical data to reveal which treatments work best.

EHRs document every step doctors or other health care workers take in treating a COVID patient, from medicines prescribed to signs of progress or setbacks. Data collected from large numbers of patients could quickly yield answers about which treatments are succeeding.

But the pandemic is bringing into stark relief just how far the nation is from achieving the promised benefits, critics say.

Dr. Richard Cook, a research scientist and health care safety specialist, traces the data problems to missteps dating to the rollout of EHR, which began in earnest in 2009 and has been controversial ever since because commercial players produced ― and hospitals bought — systems that have proved more suited to billing than public health. “This was a boondoggle from the get-go, and the promoters knew it at the time,” Cook said.

Although some health systems are beginning to draw on EHR data to spot coronavirus trends and beneficial treatments, most health organizations around the country cannot readily do so.

“If we had a national database, we’d get a readout quickly about responses to [COVID-19] treatments,” said Dr. Eric Topol, director of the Scripps Research Translational Institute.

Medical researchers favor studies that test the efficacy of a drug in a formal clinical trial, and trials are underway for a variety of possible COVID-fighting medicines, including hydroxychloroquine. The results could take months or more, however, and doctors treating critically ill patients have few options in the meantime.

Topol said “real-world” evidence drawn from computerized records of COVID patients, while not as reliable as a clinical trial, is “still very useful” to help guide medical decisions.

Medical data has been hard to tease out because much of it resides in electronic “silos,” which government officials have not required technology companies to open up and eliminate.

“We’ll see piecemeal readouts of small numbers from individual health systems,” Topol said, but “don’t have the important data that we need.”

Sanders, whose firm is a member of the , a business-sponsored group promoting coronavirus data-sharing and analysis, said federal health officials lost precious time by failing to address this need as early as mid-January.

He said the federal Centers for Disease Control and Prevention, or CDC, should have devised a COVID data-collection plan using standardized terminology so hospitals with incompatible EHRs could compare notes on the fast-paced pandemic.

The CDC did not respond to written requests seeking comment. A spokesman for the Health and Human Services office that coordinates health information technology policy said: “This is a novel disease so the health care system did not know what data we needed to collect ― we are learning that the system needs to build out reporting information on multiple clinical features.”

Still, several of the top EHR manufacturers have joined the data-sharing coalition, which is pledging to at least partially fill the information void. The group has access to COVID data from about two dozen health systems and is expecting to add more.

“This is the first attempt at this that I’m aware of where inherently competitive EHR vendors have come together to work together with clinical researchers,” said Dr. Brian Anderson, chief digital health physician with the MITRE Corp., a nonprofit technology group that formed the coalition in late March.

Anderson said the coalition is “getting close” to being able to share some results from reports of treating people with convalescent plasma recovered from patients who have survived COVID-19. The group is also examining treatment data on the drug as it irons out some of the technical difficulties that complicated its analysis of hydroxychloroquine. Last week, the Food and Drug Administration that hydroxychloroquine could cause heart problems and should be used only in a hospital or clinical trial.

There are other signs the EHR industry is relaxing its grip on medical data in response to the emergency. Major EHR vendor Cerner Corp. has researchers access to some types of COVID-19 data, including “clinical complications and outcomes that could help drive important medical decisions.”

And some health systems have begun publishing data drawn from EHRs. One released this month, for instance, tracked the outcome of 5,700 coronavirus patients treated at 12 hospitals in a New York City health system and found that 88% of patients placed on ventilators had died. All the hospitals shared the same records vendor.

“In crisis, people seek data and authorities demand it,” said Cook, the health care safety specialist. But, he said, “it is not possible to build such a system on demand.”

Ross Koppel, a professor at the University of Pennsylvania and longtime EHR safety expert, said that the COVID-19 pandemic illustrates both “strengths and disappointments” of the digital systems.

While health systems using a single vendor have been able to pool data, Koppel said, the industry has battled regulators seeking to adopt common standards, a practice known as interoperability.

“That failure to mine these oceans of invaluable data reflects the power of the vendors to prevent government requirements for data standards and interoperability,” he said.

Limits in electronic data collection systems also are hindering COVID-19 public health and surveillance efforts.

Officials said they are sometimes required to manually fill out and fax some forms, wasting valuable time. Some information must be printed out from EHRs and reentered by public health authorities because it cannot be sent electronically.

Certain CDC , such as Person Under Investigation COVID case reports, can take up to 30 minutes to complete. Other forms exchanged between hospitals and laboratories often are missing critical information, leading to delays in contacting patients and identifying people they had close contact with. In some states, demographic information on race and ethnicity is missing 85% of the time, and patients’ addresses, half the time, according to Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.

“We’re using yesterday’s technology for the biggest public health emergency in our lifetimes,” Hamilton said. “COVID has demonstrated for people what we’ve known all along. You can’t leave public health at the end of the line.”

The government’s health IT chief says a new administrative to promote interoperability and bar EHR manufacturers from impeding the flow of information will take time to change behavior.

“If this were to have happened three or four years in the future when we have interoperability … we would be in a much better spot here. But unfortunately, that’s not quite the case, but we’re still keeping our work going,” Donald Rucker, national coordinator for health information technology, said during an April 15 virtual .

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