Instead of typing on her computer keyboard during the exam, Urban’s primary care physician at the , 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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En lugar de teclear en su computadora durante la consulta, la médica de atención primaria de Urban, en la práctica  en Media, Pennsylvania, usó un asistente de inteligencia artificial (IA) conocido como ambiental para tomar notas.

Al final de los 30 minutos de la visita, la doctora le mostró a Urban el resumen que generó el programa: un documento claramente organizado por secciones con su historial médico, los hallazgos del examen físico y un plan de evaluación y tratamiento para su artritis reumatoide y los sofocos, entre otros detalles.

La nota clínica —que Urban también pudo revisar más tarde en el portal para pacientes— fue increíblemente detallada, dijo. Resumía todas sus preguntas y preocupaciones, así como las respuestas de la doctora. El asistente “se aseguró de que no se nos pasara nada”, dijo Urban.

Los médicos están considerando a estos asistentes de IA ambiental como una herramienta revolucionaria que les permite concentrarse en sus pacientes en lugar de en el teclado.

indican que, al liberar a los doctores de la tarea tediosa y que consume tiempo, de documentar cada encuentro con un paciente, estos asistentes podrían ayudar a reducir el agotamiento profesional y el llamado “tiempo en pijama”: horas extra en casa para ponerse al día con el trabajo.

El potencial de la inteligencia artificial para transformar todos los aspectos del sistema de salud —desde la atención directa hasta la eficiencia clínica y la innovación médica— es un tema de gran interés, incluso dentro de la administración Trump.

En enero de 2025, el presidente Donald Trump emitió para eliminar barreras al liderazgo estadounidense en inteligencia artificial. Más tarde ese mismo año, el Departamento de Salud y Servicios Humanos (HHS, por sus siglas en inglés) publicó invitando a distintos sectores a opinar sobre cómo acelerar la adopción de la IA en el sistema de salud.

En los últimos años, varias empresas emergentes han lanzado asistentes de IA ambiental que pueden integrarse a los registros médicos electrónicos (EHR, por sus siglas en inglés). Epic, el proveedor líder del mercado de EHR, está probando , que planea lanzar de forma más amplia a principios de este año, según , médica de medicina familiar, directora médica y vicepresidenta de informática clínica en Epic.

Expertos en tecnología estiman que un tercio de los proveedores ya tiene acceso a esta tecnología. A medida que su adopción se acelera, muchos anticipan que se convertirá en una herramienta de reclutamiento, un requisito básico para nuevos profesionales clínicos, quienes, , cada vez valoran más el equilibrio entre vida laboral y personal.

“Es parte de mantener felices a los médicos”, dijo , profesor y jefe del Departamento de Medicina en la Universidad de California en San Francisco. Su próximo libro, , explora cómo la IA está transformando la atención de salud. “Muchos sistemas de salud que inicialmente hacían cálculos estrictos sobre el retorno de la inversión ahora están flexibilizando su postura y reconociendo que el costo de contratar y retener médicos es bastante alto”.

Pero aún hay muchas preguntas. ¿Mejora la atención médica y los resultados en salud el uso de asistentes de IA ambiental? ¿Usarán los médicos el tiempo que ganan para ofrecer mejor atención o solo para ver a más pacientes? ¿Hasta qué punto podría aumentar el costo de una consulta si el asistente de IA se conecta a un sistema de codificación que optimiza los cobros?

Por ahora, estas preguntas siguen sin respuesta.

El papel del asistente

Urban dijo que la presencia del asistente de IA no cambió mucho su experiencia como paciente.

Normalmente, luego de tener el permiso verbal del paciente, el asistente graba la visita con un teléfono y organiza la conversación en el formato de una nota clínica, omitiendo los comentarios sin relevancia médica, pero incluyendo información importante como el diagnóstico reciente de cáncer de un familiar, por ejemplo. La nota del asistente suele integrarse en la Historia Clínica Electrónica (HCE) del proveedor. Luego, el médico revisa y firma el documento.

Aunque para los pacientes la consulta puede no sentirse muy diferente, algunos profesionales aseguran que los asistentes de IA ambiental están cambiando los encuentros con los pacientes de formas inesperadas.

“Ahora, cuando hago un examen físico, tengo que decir en voz alta lo que estoy haciendo y lo que estoy encontrando para que el asistente lo documente”, dijo , la médica de atención primaria de Urban. “A la gente le parece muy interesante”, añadió.

Por ejemplo, cuando Capalongo coloca su estetoscopio sobre la arteria carótida, debajo de la mandíbula de un paciente, puede decir en voz alta que no escucha un “soplo”, un sonido vascular que puede indicar aterosclerosis. Los pacientes le han dicho: “Nunca supe por qué un médico escuchaba ahí”.

Decir en voz alta cosas que normalmente solo estarían en la nota clínica puede representar un desafío, especialmente durante exámenes físicos delicados. Algunos médicos consideran importante adaptar la conversación según el contexto.

“Hay pacientes que están ansiosos o asustados, y que yo diga cosas que no entienden, o que les pueden preocupar durante un examen incómodo, no ayuda y, la verdad, es insensible frente a lo que están viviendo”, dijo , profesora de la División de Cirugía de Colon y Recto en la Universidad de Minnesota, y directora de informática en salud e inteligencia artificial en Fairview Health Services, en Minneapolis. “Tengo eso muy presente y me aseguro de registrarlo después de la consulta”.

“La manera en que hablamos con los pacientes sobre estas herramientas es muy importante, especialmente para mantener la confianza y asegurar que la información sea precisa”, añadió Melton-Meaux.

Notas más completas, pero con desafíos

Según , pediatra y vicepresidente de informática aplicada en el sistema de salud de la Universidad de Pennsylvania, estudios han encontrado que, en aspectos como integridad, claridad y puntualidad, las notas creadas por asistentes de IA ambiental son generalmente tan buenas como —y a veces mejores que— las notas tradicionales.

Sin embargo, persiste la preocupación por las llamadas “alucinaciones” de la IA, cuando la herramienta genera información falsa o inventada.

Kaiser Permanente, en adoptar esta tecnología, la ha puesto a disposición de más de 25.000 médicos, profesionales avanzados y farmacéuticos en todo su sistema. Según , internista y vicepresidente de IA y tecnologías emergentes en Kaiser, las alucinaciones “son bastante raras”.

Pero ocurren. Por ejemplo, una nota generada por IA podría indicar que el médico planea derivar a un paciente a neurología o hacer un seguimiento en dos semanas, cuando en realidad eso nunca se dijo.

“La tecnología no es perfecta, y por eso los médicos la revisan”, señaló Yang. El sistema aprende de las consultas médicas habituales, agregó. Por eso es clave que una persona verifique el contenido generado.

Aun así, incluso ese modelo de “humano editando” tiene sus limitaciones, dijo Wachter. “Los humanos no somos buenos para mantener la vigilancia constante”, afirmó.

¿Mayor desigualdad tecnológica?

A medida que el uso de estos asistentes se vuelve más común, algunas personas en el sector temen que la tecnología profundice la brecha entre quienes tienen acceso y quienes no.

Los grandes sistemas de salud pueden avanzar con estas tecnologías, dijo Melton-Meaux. “¿Pero qué pasa con los hospitales rurales o los consultorios pequeños? Se necesitan más recursos”.

El entusiasmo por los asistentes de IA contrasta con la frustración generalizada que causaron los registros médicos electrónicos cuando se implementaron hace una década para reemplazar los historiales en papel.

“Durante los últimos 10 años, cuando se adoptaron los HCE, todos nos convertimos en escribas gruñones y sobrecargados”, recordó Wachter.

Con la llegada de los asistentes de IA, los médicos sienten que la tecnología ahora trabaja para ellos, y no al revés, según expertos en IA aplicada a la salud.

Además, estos asistentes funcionan como “entrenamiento” para una adopción más amplia de la inteligencia artificial en la atención médica, señaló Wachter.

Para mejorar el valor del sistema de salud y reducir costos, explicó, necesitamos un sistema que aumente las probabilidades de que los médicos ejerzan una medicina basada en evidencia, ordenando los estudios adecuados y recetando los medicamentos correctos.

“Eso aún está a unos años de distancia, pero dependerá totalmente de la IA”, dijo.

Epic ha desarrollado alrededor de 60 herramientas de IA para pacientes, profesionales clínicos y la administración, y tiene más de 100 en desarrollo.

“Esto es mucho más que un asistente”, dijo Gerhart, de Epic. “Literalmente escucha y actúa de una manera que me prepara todo para que yo pueda tomar decisiones”.

[Aclaración: Este artículo fue revisado a las 11 am ET del 6 de marzo de 2026 para aclarar la ubicación de los agentes del Servicio de Inmigración y Control de Aduanas de Estados Unidos cerca de clínicas y hospitales.]

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Agentes del Servicio de Inmigración y Control de Aduanas (ICE) también se han presentado en clínicas comunitarias.

Proveedores de salud dicen que intentaron  donde había una clínica móvil, apuntaron a las caras de médicos que atendían a personas sin hogar y detuvieron a un transeúnte, subiéndolo a un auto sin identificación, frente a un centro comunitario de salud.

En respuesta a estas actividades de control migratorio alrededor de clínicas y hospitales, el gobernador demócrata Gavin Newsom promulgó el mes pasado la ley , que prohíbe a los centros médicos permitir el acceso de agentes federales a áreas privadas, incluidos los lugares donde los pacientes reciben tratamiento o hablan sobre temas de salud, sin una orden judicial o de registro válidas.

Si bien el proyecto de ley recibió un amplio apoyo de grupos médicos, trabajadores de salud y defensores de los derechos de los inmigrantes, expertos legales afirman que California no puede impedir que las autoridades federales realicen sus funciones en lugares públicos, como vestíbulos y salas de espera de hospitales, estacionamientos de centros de salud y vecindarios aledaños: lugares donde las recientes actividades del ICE han generado indignación y temor.

En enero, la administración Trump revocó las restricciones federales previas sobre la aplicación de las leyes de inmigración en o cerca de áreas sensibles, incluidos los establecimientos de salud.

“El problema que enfrentan los estados es la ”, dijo la abogada , profesora en la Facultad de Leyes de Georgetown. Explicó que el gobierno federal tiene derecho a realizar actividades de control migratorio y que existen límites a lo que el estado puede hacer para impedirlas.

La ley de California designa el estatus migratorio y el lugar de nacimiento de un paciente como información protegida, la cual, al igual que los expedientes médicos, no puede divulgarse a las autoridades sin una orden judicial.

Además, requiere que los centros de salud establezcan procedimientos claros para gestionar los pedidos de las autoridades de inmigración, incluyendo la capacitación del personal para notificar de inmediato a un administrador designado o a un asesor legal si los agentes intentan entrar a un área privada o revisar los expedientes de los pacientes.

Otros estados gobernados por demócratas han promulgado leyes para proteger a los pacientes en hospitales y centros de salud.

En mayo, el gobernador de Colorado, Jared Polis, promulgó la  , que penaliza a los hospitales por compartir sin autorización información sobre personas que se encuentran en el país de manera irregular y prohíbe a los agentes del ICE ingresar a áreas privadas de los centros de salud sin una orden judicial.

En junio, entró en vigencia en Maryland que exige al fiscal general crear directrices para mantener al ICE fuera de los centros de salud. Nuevo México ha implementado para los datos de pacientes, y Rhode Island a los establecimientos de salud preguntar a los pacientes sobre su estatus migratorio.

Los estados gobernados por republicanos se han alineado con los esfuerzos federales para evitar que se gaste en atención médica de inmigrantes sin papeles.

Estos inmigrantes no son elegibles para la cobertura integral de Medicaid, pero los estados sí facturan al gobierno federal por la en ciertos casos. Bajo una ley que , Florida exige que los hospitales que aceptan Medicaid pregunten sobre el estatus migratorio del paciente. En Texas, los hospitales ahora deben informar cuánto gastan en la atención de inmigrantes indocumentados.

“Los texanos no deberían tener que asumir el costo de la atención médica de los inmigrantes ilegales”, declaró el gobernador Greg Abbott al emitir su el año pasado.

Los esfuerzos de California por limitar la aplicación de la ley federal se producen en un momento en que el estado, donde más de una cuarta parte de los residentes , se ha convertido en blanco de la represión migratoria del presidente Donald Trump.

Newsom promulgó la SB 81 como parte de que prohíbe a los agentes de inmigración entrar en las escuelas sin una orden judicial, exige que los agentes se identifiquen y prohíbe el uso de máscaras. La SB 81 se aprobó con una votación partidista sin oposición formal.

“No somos Corea del Norte”, expresó Newsom durante una ceremonia de firma de leyes en septiembre. “Estamos rechazando estas tendencias y acciones autoritarias de esta administración”.

Algunos partidarios del proyecto de ley y expertos legales afirmaron que la ley de California puede impedir que el ICE viole los derechos de privacidad de los pacientes ya existentes.

Entre estos derechos se incluye la Cuarta Enmienda, que en lugares donde las personas tienen una expectativa razonable de privacidad. Las deben ser emitidas por un tribunal y firmadas por un juez. Sin embargo, con frecuencia los agentes del ICE utilizan órdenes administrativas para intentar acceder a áreas privadas para las que no tienen autoridad, dijo Genovese.

“La gente no siempre entiende la diferencia entre una orden administrativa, que es un simple documento, y una orden judicial, que es ejecutable”, dijo Genovese. Añadió que las órdenes judiciales rara vez se emiten en casos de inmigración.

El Departamento de Seguridad Nacional (DHS) ha dicho que ni los requisitos de identificación para los agentes del orden público en California, calificándolos de inconstitucionales. El departamento no respondió a la solicitud de comentarios sobre las nuevas normas estatales para centros de salud, que entraron en vigencia de inmediato.

Tanya Broder, asesora principal del National Immigration Law Center, afirmó que las detenciones de inmigrantes en centros de salud parecen ser relativamente raras. Sin embargo, la decisión federal de revocar las protecciones en torno a áreas sensibles, dijo, “ha generado temor e incertidumbre en todo el país”.

Muchos de los informes periodísticos más destacados sobre agentes de inmigración en centros de salud ocurrieron en California, principalmente en relación con pacientes detenidos que habían sido trasladados a un establecimiento de salud para recibir atención médica.

La California Nurses Association, el sindicato de enfermeras más grande del estado, copatrocinó el proyecto de ley y expresó su preocupación por el trato que recibió Milagro Solis-Portillo, una salvadoreña de 36 años que estuvo bajo vigilancia constante del ICE en el Hospital Glendale Memorial durante el verano.

Los líderes sindicales también de agentes en el California Hospital Medical Center, al sur del centro de Los Ángeles. Según Anne Caputo-Pearl, enfermera de parto y representante sindical principal del hospital, los agentes llevaron a una paciente el 21 de octubre y permanecieron en su habitación durante casi una semana. El diario informó que a Carlitos Ricardo Parias, creador de contenido de TikTok, lo llevaron al hospital ese mismo día tras resultar herido durante un operativo de control migratorio en el sur de Los Ángeles.

La presencia del ICE intimidó tanto a enfermeras como a pacientes, aseguró Caputo-Pearl, y motivó restricciones de visitas en el hospital. “Queremos una explicación más clara”, dijo. “¿Por qué se permite que estos agentes estén en la habitación?”.

Sin embargo, representantes de hospitales y clínicas dijeron que ya cumplen con los requisitos de la ley, los cuales refuerzan en gran medida las publicadas por el fiscal general del estado, Rob Bonta, en diciembre.

Las clínicas comunitarias a lo largo del condado de Los Ángeles, que atienden a más de dos millones de pacientes al año, incluyendo una gran proporción de inmigrantes, han estado implementando las directrices del fiscal general durante meses, según dijo Louise McCarthy, presidenta y directora ejecutiva de la Asociación de Clínicas Comunitarias del Condado de Los Ángeles.

Agregó que la ley debería ayudar a garantizar estándares unificados en todos los establecimientos de salud a los que las clínicas derivan pacientes y brindarles la tranquilidad de que hay procedimientos para protegerlos.

Aun así, no se puede evitar que se produzcan redadas migratorias en la comunidad, lo que ha provocado que algunos pacientes e incluso trabajadores de salud teman salir a la calle, señaló McCarthy. Se han producido algunos incidentes cerca de clínicas, incluyendo el arresto de un transeúnte frente a una clínica en el este de Los Ángeles, que un guardia de seguridad grabó en video, contó.

“Hemos escuchado a personal de las clínicas preguntar: ‘¿Es seguro para mí salir?'”, dijo.

En St. John’s Community Health, una red de 24 centros de salud comunitarios y cinco clínicas móviles en el sur de Los Ángeles y el Inland Empire, el director ejecutivo Jim Mangia coincidió en que la nueva ley no puede prevenir toda la actividad de control migratorio, pero afirmó que sí les brinda a las clínicas una herramienta para defenderse si se presentan agentes, algo que su personal ya ha tenido que hacer.

Mangia dijo que el personal de St. John’s tuvo dos encuentros con agentes de inmigración durante el verano. En uno de ellos, impidió que agentes armados ingresaran a un estacionamiento con rejas en un centro de rehabilitación de adicciones donde médicos y enfermeras atendían a pacientes en una clínica móvil.

Otro incidente ocurrió en julio, cuando agentes de inmigración a caballo y en vehículos blindados, en una demostración de fuerza por parte del gobierno de Trump.

Mangia dijo que agentes enmascarados con equipo táctico completo rodearon una carpa de atención médica callejera donde el personal de St. John’s atendía a personas sin hogar, les gritaron que se fueran y les apuntaron con un arma. Según Mangia, los proveedores quedaron tan conmocionados por el incidente que tuvieron que recurrir a profesionales de salud mental para ayudarlos a sentirse seguros al regresar de nuevo a la calle.

Un vocero del DHS declaró a CalMatters que, en raras ocasiones, cuando los agentes entran a ciertos lugares sensibles, los oficiales necesitan de un supervisor secundario.

Desde entonces, St. John’s ha intensificado sus esfuerzos para brindar apoyo y capacitación al personal y ha ofrecido a los pacientes con miedo a salir la opción de visitas médicas a domicilio y entrega de alimentos. Los temores de los pacientes y la actividad del ICE han disminuido desde el verano, afirmó Mangia, pero con el DHS planeando , duda que esta situación se mantenga.

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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 report released this year 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 Ñî¹óåú´«Ã½Ò•îl 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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• 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 KFF. “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.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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This story can be republished for free (details).