The opioid epidemic is spurring medical institutions around the country to create fellowships for aspiring doctors who want to treat the disorder with the same precision and science as other diseases.

This article was first published on Friday, March 22, 2019 at Kaiser Health News.

By Will Stone, KJZZ

The U.S. Surgeon General's office estimates that more than 20 million people have a substance use disorder. Meanwhile, the nation's drug overdose crisis shows no sign of slowing.

Yet, by all accounts, there aren't nearly enough physicians who specialize in treating addiction — doctors with extensive clinical training who are board-certified in addiction medicine.

The opioid epidemic has made this doctor deficit painfully apparent. And it's spurring medical institutions around the country to create fellowships for aspiring doctors who want to treat substance use disorder with the same precision and science as other diseases.

Now numbering more than 60, these fellowship programs offer physicians a year or two of postgraduate training in clinics and hospitals where they learn evidence-based approaches for treating addiction.

Such programs are drawing a new, talented generation of idealistic doctors — idealists like Dr. Hillary Tamar.

Driven To Connect With Patients In Need

Tamar, now in the second year of a family medicine residency in Phoenix, wasn't thinking about addiction medicine when she first started medical school in Chicago.

"As a medical student, honestly, you do your ER rotation, people label a patient as 'pain-seeking,' and it's bad," Tamar said. "And that's all you do about it."

But in her fourth year of med school, she happened to be assigned to a rotation at a rehab facility in southern Arizona.

"I was able to connect with people in a way that I haven't been able to connect with them in another specialty," the 28-year-old recalled.

Working with patients there transformed Tamar's understanding of addiction, she said, and showed her the potential for doctors to change lives.

"They can go from spending all their time pursuing the acquisition of a substance to being brothers, sisters, daughters [and] fathers making breakfast for their kids again," she said. "It's really powerful."

When Tamar finishes her residency, she plans to pursue a fellowship in addiction medicine. She sees addiction medicine, like primary care, as a way to build lasting relationships with patients — and a way to focus on more than a single diagnosis.

"I love when I see addiction patients on my schedule, even if they're pregnant and on meth," she said. "More room to do good — it's exciting."

Build A Program And They Will Come

Doctors with Tamar's enthusiasm are sorely needed, said Dr. Anna Lembke, medical director of Addiction Medicine at Stanford University School of Medicine and a longtime researcher in the field.

"Even 10 years ago," Lembke said, "I couldn't find a medical student or resident interested in learning about addiction medicine if I looked under a rock. They were just not out there."

But Lembke sees a change in the upcoming generation of doctors drawn to the field because they care about social justice.

"I now have medical students and residents knocking on my door, emailing me; they all want to learn more about addiction," Lembke said.

Historically, the path to addiction medicine was through psychiatry. That model started to change in 2015, when the American Board of Medical Specialties — considered the gold standard in physician certification in the U.S. — recognized addiction medicine as a bona fide subspecialty and opened up the training to physicians from other medical fields.

Until then, Lembke said, there had been no way to get addiction fellowships approved through the nationally recognized Accreditation Council for Graduate Medical Education. And that made recruiting young talent — and securing funding for their fellowships — difficult.

Last year, ACGME began accrediting its first batch of addiction medicine fellowship programs.

"We have got an enormous gap between the need and the doctors available to provide that treatment," Lembke said.

"At least the medical community has begun to wake up to consider not only their role in triggering this opioid epidemic, but also the ways they need to step up to solve the problem," she said.

Laying The Foundation

When Dr. Luke Peterson finished his residency in family medicine in Phoenix in 2016, there were no addiction medicine fellowships in Arizona.

So he moved to Seattle to complete a year-long fellowship at Swedish Cherry Hill Family Medicine Residency. There he learned, among other things, how to treat pregnant women who are in recovery from drug use.

"I really needed to do a fellowship if I was going to make an impact and be able to teach others to make the same impact," said Peterson, who went on to help found an addiction medicine fellowship program in Arizona. His program is based in Phoenix at the University of Arizona's medical school and its teaching hospital, run by Banner Health and the Phoenix VA.

Arizona's two addiction medicine fellowships received ACGME accreditation last year — a stamp of approval that made the programs desirable choices for up-and-coming physicians, Peterson said.

Not every doctor who plans to treat substance use disorder needs to do a fellowship, he said. In fact, his goal is to integrate addiction medicine into primary care settings.

But a specialist can serve as a referral center and resource hub for community doctors.

For example, physicians can learn from a specialist such as Peterson how to provide medication-assisted treatment like buprenorphine.

Public health leaders have been pushing to get more physicians trained in evidence-based treatment like buprenorphine, which has been shown to reduce the risk of death among people who have recovered from an opioid overdose.

"As we provide more education and more support to primary care physicians, they will feel more comfortable screening and treating for addiction," Peterson said.

Peterson's own journey into addiction medicine began during a rotation with a family doctor in rural Illinois.

"In moments that most doctors find uncomfortable — maybe a patient comes in to request pain medication and you're seeing the negative side effects — he did not shy away from that situation," Peterson said. "He addressed it head-on."

It was a formative experience for Peterson — one he wants other young doctors to have. And he recognizes the urgency.

"In 20 or 30 years from now," Peterson said, "those medical students are going to look back at my current generation of doctors, and we will be judged by how we responded to this epidemic," in the same way he and his peers now look back at how doctors handled the HIV epidemic.

One of the first steps in stopping the epidemic, he said, is making sure there are enough doctors on the ground who know how to respond.

Many of today's medical students, people like Michelle Peterson (no relation to Luke), say they feel the calling, too.

She's in her first year at the University of Arizona College of Medicine and became interested in addiction after working at an outpatient treatment center.

She said she's already learning about addiction in her classes, hearing from doctors in the field and seeing others classmates equally engaged.

"It's definitely not just me," she said. "There are quite a few people here really interested in addiction."

It's a trend she and her mentors hope will continue.

This story is part of a partnership that includes KJZZ, NPR and Kaiser Health News.

Will Stone, KJZZ: @WStonereports

Delaying vaccines is risky. Many pediatricians say a more gradual approach to vaccinations is better than no vaccinations, but they offer hard advice to parents considering it.

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

By Bernard J. Wolfson

When Elyse Imamura's son was an infant, she and her husband, Robert, chose to spread out his vaccinations at a more gradual pace than the official schedule recommended.

"I was thinking, 'OK, we're going to do this,'" says Imamura, 39, of Torrance, Calif. "'But we're going to do it slower so your body gets acclimated and doesn't face six different things all of a sudden.'"

Seven years later, Imamura says her son, Amaru, is a "very healthy," active boy who loves to play sports.

But delaying vaccines is risky. Many pediatricians will tell you a more gradual approach to vaccinations is better than no vaccinations at all, but they offer some hard advice to parents who are considering it.

"Every day you are eligible to get a vaccine that you don't get one, the chance of an invasive disease remains," says Dr. Charles Golden, executive medical director of the Primary Care Network at Children's Hospital of Orange County.

Recent outbreaks of measles, mumps and whooping cough have once again reignited a war of words over vaccinations.

The squabble is often painted as two-sided: in one camp, the medical establishment, backed by science, strongly promoting the vaccination of children against 14 childhood diseases by age 2. In the other, a small but vocal minority — the so-called anti-vaxxers — shunning the shots, believing the risks of vaccines outweigh the dangers of the diseases.

The notion that there are two opposing sides obscures a large middle ground occupied by up to one-quarter of parents, who believe in vaccinating their children but, like the Imamuras, choose to do so more gradually. They worry about the health impact of so many shots in so short a period, and in some cases they forgo certain vaccines entirely.

Alternative vaccine schedules have been around for years, promoted by a few doctors and touted by celebrities such as Jenny McCarthy. Donald Trump endorsed the idea during a 2015 Republican presidential debate.

The concept gained a large following more than a decade ago, when Robert W. Sears, an Orange County, Calif., pediatrician, published "The Vaccine Book," in which he included two alternative schedules. Both delay vaccines, and one of them also allows parents to skip shots for measles, mumps and rubella (MMR), chickenpox, hepatitis A and polio.

Sears' book became the vaccination bible for thousands of parents, who visited their pediatricians with it in tow. But his ideas have been widely rejected by the medical establishment and he was punished by the Medical Board of California last year after it accused him of improperly exempting a 2-year-old from all future vaccinations. He declined to be interviewed for this column.

Imamura, who describes herself as "definitely not an anti-vaxxer," says she and her husband "followed Sears to a T." They limited the number of vaccines for their son to no more than two per appointment, compared with up to six in the official schedule. And they skipped the shot for chickenpox.

She concedes, however: "If there'd been outbreaks like now, it would have affected my thinking about delaying vaccines."

The ideas promoted by Sears and others have contributed to parents' worries that front-loading shots could overwhelm their babies' immune systems or expose them to toxic levels of chemicals such as mercury, aluminum and formaldehyde.

But scientific evidence does not support that. Infectious-disease doctors and public health officials say everyday life presents far greater challenges to children's immune systems.

"Touching another human being, crawling around the house, they are exposed to so many things all the time on a daily basis, so these vaccines don't add much to that," says Dr. Pia Pannaraj, a pediatric infectious-diseases specialist at Children's Hospital Los Angeles.

The same is true of some of the metals and chemicals contained in vaccines, which vaccination skeptics blame for autism despite numerous studies finding no link — the most recent published earlier this month.

In the first six months of life, babies get far more aluminum from breast milk and infant formula than from vaccines, public health experts say.

"When you look at babies that have received aluminum-containing vaccines, you can't even tell the level has gone up," says Paul Offit, professor of pediatrics at Children's Hospital of Philadelphia (CHOP) and director of the hospital's Vaccine Education Center. The same is true of formaldehyde and mercury, he adds.

(Offit co-invented Merck's RotaTeq vaccine for rotavirus, and CHOP sold the royalty rights to it for $182 million in 2008. CHOP declined to comment on what Offit's share was.)

Parents who are concerned about mercury, aluminum or other vaccine ingredients should avoid information shared on social media, which can be misleading. Instead, check out the Vaccine Education Center on CHOP's website at www.chop.edu by clicking on the "Departments" tab.

The Centers for Disease Control and Prevention also provides a detailed breakdown of the ingredients in every vaccine at http://www.cdc.gov/vaccines.

If your child has a condition you fear might be incompatible with vaccinations, discuss it with your pediatrician. The CDC gives very specific guidelines on who should not receive vaccines, including kids who have immune system deficiencies or are getting chemotherapy or taking certain medications.

If your children are not among them, vaccinate them. That will help prevent outbreaks, protecting those who, for medical reasons, have not received the shots.

When parents resist, Pannaraj says, she emphasizes that the potential harm from infections is far more severe than the risks of the vaccines. She notes, for example, that the risk of getting encephalitis from the measles is about 1,000 times greater than from the vaccine.

Still, side effects do occur. Most are mild, but severe cases — though rare — are not unheard of. To learn about the potential side effects of vaccines, look on the CDC website or discuss it with your pediatrician.

Emily Lawrence Mendoza, 35, says that after her second child, Elsie, got her first measles, mumps and rubella (MMR) shot at 12 months of age, she spiked a fever and developed a full body rash that looked like a mild version of the disease.

It took three visits to urgent care before a doctor acknowledged that Elsie, now almost 5, could have had a mild reaction to the vaccine. After that, Mendoza, of Orange, Calif., decided to adopt a more gradual vaccination schedule for her third child.

Yet Mendoza says Elsie's adverse reaction made her realize the importance of vaccinations: "What if she'd been exposed to a full-blown case of the measles?"

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

Bernard J. Wolfson: bwolfson@kff.org, @bjwolfson

The U.S. government claimed that turning American medical charts into electronic records would make healthcare better, safer, and cheaper. Ten years and $36 billion later, the system is an unholy mess.

This article was first published on March 18, 2019 in Kaiser Health News.

By Fred Schulte and Erika Fry, Fortune

The pain radiated from the top of Annette Monachelli's head, and it got worse when she changed positions. It didn't feel like her usual migraine. The 47-year-old Vermont attorney turned innkeeper visited her local doctor at the Stowe Family Practice twice about the problem in late November 2012, but got little relief.

Two months later, Monachelli was dead of a brain aneurysm, a condition that, despite the symptoms and the appointments, had never been tested for or diagnosed until she turned up in the emergency room days before her death.

Monachelli's husband sued Stowe, the federally qualified health center the physician worked for. Owen Foster, a newly hired assistant U.S. attorney with the District of Vermont, was assigned to defend the government. Though it looked to be a standard medical malpractice case, Foster was on the cusp of discovering something much bigger — what his boss, U.S. Attorney Christina Nolan, calls the "frontier of healthcare fraud" — and prosecuting a first-of-its-kind case that landed the largest-ever financial recovery in Vermont's history.

Foster began with Monachelli's medical records, which offered a puzzle. Her doctor had considered the possibility of an aneurysm and, to rule it out, had ordered a head scan through the clinic's software system, the government alleged in court filings. The test, in theory, would have caught the bleeding in Monachelli's brain. But the order never made it to the lab; it had never been transmitted.

The software in question was an electronic health records system, or EHR, made by eClinicalWorks (eCW), one of the leading sellers of record-keeping software for physicians in America, currently used by 850,000 health professionals in the U.S. It didn't take long for Foster to assemble a dossier of troubling reports — Better Business Bureau complaints, issues flagged on an eCW user board, and legal cases filed around the country — suggesting the company's technology didn’t work quite the way it said it did.

Until this point, Foster, like most Americans, knew next to nothing about electronic medical records, but he was quickly amassing clues that eCW's software had major problems — some of which put patients, like Annette Monachelli, at risk.

Damning evidence came from a whistleblower claim filed in 2011 against the company. Brendan Delaney, a British cop turned EHR expert, was hired in 2010 by New York City to work on the eCW implementation at Rikers Island, a jail complex that then had more than 100,000 inmates. But soon after he was hired, Delaney noticed scores of troubling problems with the system, which became the basis for his lawsuit. The patient medication lists weren’t reliable; prescribed drugs would not show up, while discontinued drugs would appear as current, according to the complaint. The EHR would sometimes display one patient's medication profile accompanied by the physician's note for a different patient, making it easy to misdiagnose or prescribe a drug to the wrong individual. Prescriptions, some 30,000 of them in 2010, lacked proper start and stop dates, introducing the opportunity for under- or overmedication. The eCW system did not reliably track lab results, concluded Delaney, who tallied 1,884 tests for which they had never gotten outcomes.

The District of Vermont launched an official federal investigation in 2015.

The eCW spaghetti code was so buggy that when one glitch got fixed, another would develop, the government found. The user interface offered a few ways to order a lab test or diagnostic image, for example, but not all of them seemed to function. The software would detect and warn users of dangerous drug interactions, but unbeknownst to physicians, the alerts stopped if the drug order was customized. "It would be like if I was driving with the radio on and the windshield wipers going and when I hit the turn signal, the brakes suddenly didn’t work," said Foster.

The eCW system also failed to use the standard drug codes and, in some instances, lab and diagnosis codes as well, the government alleged.

The case never got to a jury. In May 2017, eCW paid a $155 million settlement to the government over alleged "false claims" and kickbacks — one physician made tens of thousands of dollars — to clients who promoted its product. Despite the record settlement, the company denied wrongdoing; eCW did not respond to numerous requests for comment.

If there is a kicker to this tale, it is this: The U.S. government bankrolled the adoption of this software — and continues to pay for it. Or we should say: You do.

Which brings us to the strange, sad, and aggravating story that unfolds below. It is not about one lawsuit or a piece of sloppy technology. Rather, it's about a trouble-prone industry that intersects, in the most personal way, with every one of our lives. It's about a $3.7 trillion healthcare system idling at the crossroads of progress. And it’s about a slew of unintended consequences — the surprising casualties of a big idea whose time had seemingly come.

The Virtual Magic Bullet
 

Electronic health records were supposed to do a lot: make medicine safer, bring higher-quality care, empower patients, and yes, even save money. Boosters heralded an age when researchers could harness the big data within to reveal the most effective treatments for disease and sharply reduce medical errors. Patients, in turn, would have truly portable health records, being able to share their medical histories in a flash with doctors and hospitals anywhere in the country — essential when life-and-death decisions are being made in the ER.

But 10 years after President Barack Obama signed a law to accelerate the digitization of medical records — with the federal government, so far, sinking $36 billion into the effort — America has little to show for its investment. KHN and Fortune spoke with more than 100 physicians, patients, IT experts and administrators, health policy leaders, attorneys, top government officials and representatives at more than a half-dozen EHR vendors, including the CEOs of two of the companies. The interviews reveal a tragic missed opportunity: Rather than an electronic ecosystem of information, the nation's thousands of EHRs largely remain a sprawling, disconnected patchwork. Moreover, the effort has handcuffed health providers to technology they mostly can't stand and has enriched and empowered the $13-billion-a-year industry that sells it.

By one measure, certainly, the effort has achieved what it set out to do: Today, 96% of hospitals have adopted EHRs, up from just 9% in 2008. But on most other counts, the newly installed technology has fallen well short. Physicians complain about clumsy, unintuitive systems and the number of hours spent clicking, typing and trying to navigate them — which is more than the hours they spend with patients. Unlike, say, with the global network of ATMs, the proprietary EHR systems made by more than 700 vendors routinely don't talk to one another, meaning that doctors still resort to transferring medical data via fax and CD-ROM. ­Patients, meanwhile, still struggle to access their own records — and, sometimes, just plain can't.

Instead of reducing costs, many say, EHRs, which were originally optimized for billing rather than for patient care, have instead made it easier to engage in "upcoding" or bill inflation (though some say the systems also make such fraud easier to catch).

More gravely still, a months-long joint investigation by KHN and Fortune has found that instead of streamlining medicine, the government's EHR initiative has created a host of largely unacknowledged patient safety risks. Our investigation found that alarming reports of patient deaths, serious injuries and near misses — thousands of them — tied to software glitches, user errors or other flaws have piled up, largely unseen, in various government-funded and private repositories.

"Providers developed their own systems that may or may not even have worked well for them ... but we didn't think about how all these systems connect with one another. That was the real missing piece."

—CMS Administrator Seema Verma
 

Compounding the problem are entrenched secrecy policies that continue to keep software failures out of public view. EHR vendors often impose contractual "gag clauses" that discourage buyers from speaking out about safety issues and disastrous software installations — though some customers have taken to the courts to air their grievances. Plaintiffs, moreover, say hospitals often fight to withhold records from injured patients or their families. Indeed, two doctors who spoke candidly about the problems they faced with EHRs later asked that their names not be used, adding that they were forbidden by their healthcare organizations to talk. Says Assistant U.S. Attorney Foster, the EHR vendors "are protected by a shield of silence."

Though the software has reduced some types of clinical mistakes common in the era of handwritten notes, Raj Ratwani, a researcher at MedStar Health in Washington, D.C., has documented new patterns of medical errors tied to EHRs that he believes are both perilous and preventable. "The fact that we're not able to broadcast that nationally and solve these issues immediately, and that another patient somewhere else may be harmed by the very same issue — that just can't happen," he said.

David Blumenthal, who, as Obama’s national coordinator for health information technology, was one of the architects of the EHR initiative, acknowledged to KHN and Fortune that electronic health records "have not fulfilled their potential. I think few would argue they have."

The former president has likewise singled out the effort as one of his most disappointing, bemoaning in a January 2017 interview with Vox "the fact that there are still just mountains of paperwork … and the doctors still have to input stuff, and the nurses are spending all their time on all this administrative work. We put a big slug of money into trying to encourage everyone to digitalize, to catch up with the rest of the world … that's been harder than we expected."

Seema Verma, the current chief of the Centers for Medicare & Medicaid Services, which oversees the EHR effort today, shudders at the billions of dollars spent building software that doesn't share data — an electronic bridge to nowhere. "Providers developed their own systems that may or may not even have worked well for them," she told KHN and Fortune in an interview last month, "but we didn't think about how all these systems connect with one another. That was the real missing piece."

Perhaps none of the initiative's former boosters is quite as frustrated as former Vice President Joe Biden. At a 2017 meeting with healthcare leaders in Washington, he railed against the infuriating challenge of getting his son Beau's medical records from one hospital to another. "I was stunned when my son for a year was battling stage 4 glioblastoma," said Biden. "I couldn't get his records. I'm the vice president of the United States of America.  … It was an absolute nightmare. It was ridiculous, absolutely ridiculous, that we’re in that circumstance."

A Bridge To Nowhere
 

As Biden would tell you, the original concept was a smart one. The wave of digitization had swept up virtually every industry, bringing both disruption and, in most cases, greater efficiency. And perhaps none of these industries was more deserving of digital liberation than medicine, where life-measuring and potentially lifesaving data was locked away in paper crypts — stack upon stack of file folders at doctors' offices across the country.

Stowed in steel cabinets, the records were next to useless. Nobody — particularly at the dawn of the age of the iPhone — thought it was a good idea to leave them that way. The problem, say critics, was in the way that policy­makers set about to transform them.

"Every single idea was well-meaning and potentially of societal benefit, but the combined burden of all of them hitting clinicians simultaneously made office practice basically impossible," said John Halamka, chief information officer at Beth Israel Deaconess Medical Center, who served on the EHR standards committees under both George W. Bush and Barack Obama. "In America, we have 11 minutes to see a patient, and, you know, you're going to be empathetic, make eye contact, enter about 100 pieces of data, and never commit malpractice. It's not possible!"

KHN and Fortune examined more than two dozen medical negligence cases that have alleged that EHRs either contributed to injuries, had been improperly altered, or were withheld from patients to conceal substandard care. In such cases, the suits typically settle prior to trial with strict confidentiality pledges, so it's often not possible to determine the merits of the allegations. EHR vendors also frequently have contract stipulations, known as "hold harmless clauses," that protect them from liability if hospitals are later sued for medical errors — even if they relate to an issue with the technology.

But lawsuits, like that filed by Fabian ­Ronisky, which do emerge from this veil, are quite telling.

Ronisky, according to his complaint, arrived by ambulance at Providence Saint John's Health Center in Santa Monica on the afternoon of March 2, 2015. For two days, the young lawyer had been suffering from severe headaches while a disorienting fever left him struggling to tell the 911 operator his address.

Suspecting meningitis, a doctor at the hospital performed a spinal tap, and the next day an infectious disease specialist typed in an order for a critical lab test — a check of the spinal fluid for viruses, including herpes simplex — into the hospital's EHR.

The multimillion-dollar system, manufactured by Epic Systems Corp. and considered by some to be the Cadillac of medical software, had been installed at the hospital about four months earlier. Although the order appeared on Epic's screen, it was not sent to the lab. It turned out, Epic's software didn’t fully "interface" with the lab's software, according to a lawsuit Ronisky filed in February 2017 in Los Angeles County Superior Court. His results and diagnosis were delayed — by days, he claimed — during which time he suffered irreversible brain damage from herpes encephalitis. The suit alleged the mishap delayed doctors from giving Ronisky a drug called acyclovir that might have minimized damage to his brain.

Epic denied any liability or defects in its software; the company said the doctor failed to push the right button to send the order and that the hospital, not Epic, had configured the interface with the lab. Epic, among the nation's largest manufacturers of computerized health records and the leading provider to most of America's most elite medical centers, quietly paid $1 million to settle the suit in July 2018, according to court records. The hospital and two doctors paid a total of $7.5 million, and a case against a third doctor is pending trial. Ronisky, 34, who is fighting to rebuild his life, declined to comment.

Incidents like that which happened to Ronisky — or to Annette Monachelli, for that matter — are surprisingly common, data show. And the back-and-forth about where the fault lies in such cases is actually part of the problem: The systems are often so confusing (and training on them seldom sufficient) that errors frequently fall into a nether zone of responsibility. It can be hard to tell where human error begins and the technological short­comings end.

"In America, we have 11 minutes to see a patient, and, you know, you're going to be empathetic, make eye contact, enter about 100 pieces of data, and never commit malpractice. It's not possible!"

—John Halamka, chief information officer at Beth Israel Deaconess Medical Center
 

EHRs promised to put all of a patient's records in one place, but often that's the problem. Critical or time-sensitive information routinely gets buried in an endless scroll of data, where in the rush of medical decision-making — and amid the maze of pulldown menus — it can be missed.

Thirteen-year-old Brooke Dilliplaine, who was severely allergic to dairy, was given a probiotic containing milk. The two doses sent her into "complete respiratory distress" and resulted in a collapsed lung, according to a lawsuit filed by her mother. Rory Staunton, 12, scraped his arm in gym class and then died of sepsis after ER doctors discharged the boy on the basis of lab results in the EHR that weren't complete. And then there's the case of Thomas Eric Duncan. The 42-year-old man was sent home in 2014 from a Dallas hospital infected with Ebola virus. Though a nurse had entered in the EHR his recent travel to Liberia, where an Ebola epidemic was then in full swing, the doctor never saw it. Duncan died a week later.

Many such cases end up in court. Typically, doctors and nurses blame faulty technology in the medical-records systems. The EHR vendors blame human error. And meanwhile, the cases mount.

Quantros, a private healthcare analytics firm, said it has logged 18,000 EHR-related safety events from 2007 through 2018, 3% of which resulted in patient harm, including seven deaths — a figure that a Quantros director said is "drastically underreported."

A 2016 study by The Leapfrog Group, a patient-safety watchdog based in Washington, D.C., found that the medication-ordering function of hospital EHRs — a feature required by the government for certification but often configured differently in each system — failed to flag potentially harmful drug orders in 39% of cases in a test simulation. In 13% of those cases, the mistake could have been fatal.

The Pew Charitable Trusts has, for the past few years, run an EHR safety project, taking aim at issues like usability and patient matching — the process of linking the correct medical record to the correct patient — a seemingly basic task at which the systems, even when made by the same EHR vendor, often fail. At some institutions, according to Pew, such matching was accurate only 50% of the time. Patients have discovered mistakes as well: A January survey by the Kaiser Family Foundation found that 1 in 5 patients spotted an error in their electronic medical records. (Kaiser Health News is an editorially independent program of the foundation.)

The Joint Commission, which certifies hospitals, has sounded alarms about a number of issues, including false alarms — which account for between 85% and 99% of EHR and medical device alerts. (One study by researchers at Oregon Health & Science University estimated that the average clinician working in the intensive care unit may be exposed to up to 7,000 passive alerts per day.) Such over-warning can be dangerous. From 2014 to 2018, the commission tallied 170 mostly voluntary reports of patient harm related to alarm management and alert fatigue — the phenomenon in which health workers, so overloaded with unnecessary warnings, ignore the occasional meaningful one. Of those 170 incidents, 101 resulted in patient deaths.

The Pennsylvania Patient Safety Authority, an independent state agency that collects information about adverse events and incidents, counted 775 "laboratory-test problems" related to health IT from January 2016 to December 2017.

Related: Overridden Alerts Linked to Increase in Adverse Drug Events

Related: How DeKalb Medical Fixed Drug Safety Problems After Fatal Error

To be sure, medical errors happened en masse in the age of paper medicine, when hospital staffers misinterpreted a physician's scrawl or read the wrong chart to deadly consequence, for instance. But what is perhaps telling is how many doctors today opt for manual workarounds to their EHRs. Aaron Zachary Hettinger, an emergency medicine physician with MedStar Health in Washington, D.C., said that when he and fellow clinicians need to share critical patient information, they write it on a whiteboard or on a paper towel and leave it on their colleagues' computer keyboards.

While the Food and Drug Administration doesn’t mandate reporting of EHR safety events — as it does for regulated medical devices — concerned posts have nonetheless proliferated in the FDA MAUDE database of adverse events, which now serves as an ad hoc bulletin board of warnings about the various systems.

Further complicating the picture is that health providers nearly always tailor their one-size-fits-all EHR systems to their own specifications. Such customization makes every one unique and often hard to compare with others — which, in turn, makes the source of mistakes difficult to determine.

Dr. Martin Makary, a surgical oncologist at Johns Hopkins and the co-author of a much-cited 2016 study that identified medical errors as the third-leading cause of death in America, credits EHRs for some safety improvements — including recent changes that have helped put electronic brakes on the opioid epidemic. But, he said, "we've swapped one set of problems for another. We used to struggle with handwriting and missing information. We now struggle with a lack of visual cues to know we're writing and ordering on the correct patient."

Dr. Joseph Schneider, a pediatrician at UT Southwestern Medical Center, compares the transition we’ve made, from paper records to electronic ones, to moving from horses to automobiles. But in this analogy, he added, "our cars have advanced to about the 1960s. They still don't have seat belts or air bags."

Schneider recalled one episode when his colleagues couldn’t understand why chunks of their notes would inexplicably disappear. They figured out the problem weeks later after intense study: Physicians had been inputting squiggly brackets — {} — the use of which, unbeknownst to even vendor representatives, deleted the text between them. (The EHR maker initially blamed the doctors, said Schneider.)

A broad coalition of actors, from National Nurses United to the Texas Medical Association to leaders within the FDA, has long called for oversight on electronic-record safety issues. Among the most outspoken is Ratwani, who directs MedStar Health's National Center on Human Factors in Healthcare, a 30-­person institute focused on optimizing the safety and usability of medical technology. Ratwani spent his early career in the defense industry, studying things like the intuitiveness of information displays. When he got to MedStar in 2012, he was stunned by "the types of [digital] interfaces being used" in healthcare, he said.

In a study published last year in the journal Health Affairs, Ratwani and colleagues studied medication errors at three pediatric hospitals from 2012 to 2017. They discovered that 3,243 of them were owing in part to EHR "usability issues." Roughly 1 in 5 of these could have resulted in patient harm, the researchers found. "Poor interface design and poor implementations can lead to errors and sometimes death, and that is just unbelievably bad as well as completely fixable," he said. "We should not have patients harmed this way."

Using eye-tracking technology, Ratwani has demonstrated on video just how easy it is to make mistakes when performing basic tasks on the nation's two leading EHR systems. When emergency room doctors went to order Tylenol, for example, they saw a drop-down menu listing 86 options, many of which were irrelevant for the specified patient. They had to read the list carefully, so as not to click the wrong dosage or form — though many do that too: In roughly 1 out of 1,000 orders, physicians accidentally select the suppository (designated “PR”) rather than the tablet dose (“OR”), according to one estimate. That's not an error that will harm a patient — though other medication mix-ups can and do.

Earlier this year, MedStar’s human-factors center launched a website and public awareness campaign with the American Medical Association to draw attention to such rampant mistakes — they use the letters "EHR" as an initialism for "Errors Happen Regularly" — and to petition Congress for action. Ratwani is pushing for a central database to track such errors and adverse events.

Others have turned to social media to vent. Dr. Mark Friedberg, a health-policy researcher with the Rand Corp. who is also a practicing primary care physician, champions the Twitter hashtag ­#EHRbuglist to encourage fellow healthcare workers to air their pain points. And last month, a scathing Epic parody account cropped up on Twitter, earning more than 8,000 followers in its first five days. Its maiden tweet, written in the mock voice of an Epic overlord, read: "I once saw a doctor make eye contact with a patient. This horror must stop."

As much as EHR systems are blamed for sins of commission, it is often the sins of omission that trip up users even more.

Consider the case of Lynne Chauvin, who worked as a medical assistant at Ochsner Health System, in Louisiana. In a still-pending 2015 lawsuit, Chauvin alleges that Epic's software failed to fire a critical medication warning; Chauvin suffered from conditions that heightened her risk for blood clots, and though that history was documented in her records, she was treated with drugs that restricted blood flow after a heart procedure at the hospital. She developed gangrene, which led to the amputation of her lower legs and forearm. (Ochsner Health System said that while it cannot comment on ongoing litigation, it "remains committed to patient safety which we strongly believe is optimized through the use of electronic health record technology." Epic declined to comment.)

Echoing the complaints of many doctors, the suit argues that Epic software "is extremely complicated to view and understand," owing to "significant repetition of data." Chauvin said that her medical bills have topped $1 million and that she is permanently disabled. Her husband, Richard, has become her primary caregiver and had to retire early from his job with the city of Kenner to care for his wife, according to the suit. Each party declined to comment.

An Epidemic Of Burnout
 

The numbing repetition, the box-ticking and the endless searching on pulldown menus are all part of what Ratwani called the "cognitive burden" that's wearing out today's physicians and driving increasing numbers into early retirement.

In recent years, "physician burnout" has skyrocketed to the top of the agenda in medicine. A 2018 Merritt Hawkins survey found a staggering 78% of doctors suffered symptoms of burnout, and in January the Harvard School of Public Health and other institutions deemed it a "public health crisis."

One of the co-authors of the Harvard study, Ashish Jha, pinned much of the blame on "the growth in poorly designed digital health records … that [have] required that physicians spend more and more time on tasks that don’t directly benefit patients."

Few would deny that the swift digitization of America's medical system has been transformative. With EHRs now nearly universal, the face and feel of medicine has changed. The doctor is now typing away, making more eye contact with the computer screen, perhaps, than with the patient. Patients don’t like that dynamic; for doctors, whose days increasingly begin and end with such fleeting encounters, the effect can be downright deadening.

"You're sitting in front of a patient, and there are so many things you have to do, and you only have so much time to do it in — seven to 11 minutes, probably — so when do you really listen?" asked John-Henry Pfifferling, a medical anthropologist who counsels physicians suffering from burnout. "If you go into medicine because you care about interacting, and then you're just a tool, it's dehumanizing," said Pfifferling, who has seen many physicians leave medicine over the shift to electronic records. "It's a disaster," he said.

Beyond complicating the physician-patient relationship, EHRs have in some ways made practicing medicine harder, said Dr. Hal Baker, a physician and the chief information officer at WellSpan, a Pennsylvania hospital system. "Physicians have to cognitively switch between focusing on the record and focusing on the patient," he said. He points out how unusual — and potentially dangerous — this is: "Texting while you're driving is not a good idea. And I have yet to see the CEO who, while running a board meeting, takes minutes, and certainly I've never heard of a judge who, during the trial, would also be the court stenographer. But in medicine … we’ve asked the physician to move from writing in pen to [entering a computer] record, and it’s a pretty complicated interface."

Related: Exhaustion and Cynicism Drive Physician Burnout Increase at Mass General

Related: Physicians Disillusioned by How EHR Systems, Value-Based Care Changing Profession

Even if docs may be at the keyboard during visits, they report having to spend hours more outside that time — at lunch, late at night — in order to finish notes and keep up with electronic paperwork (sending referrals, corresponding with patients, resolving coding issues). That's right. EHRs didn't take away paperwork; the systems just moved it online. And there's a lot of it: 44% of the roughly six hours a physician spends on the EHR each day is focused on clerical and administrative tasks, like billing and coding, according to a 2017 Annals of Family Medicine study.

For all that so-called pajama time — the average physician logs 1.4 hours per day on the EHR after work — they don't get a cent.

Many doctors do recognize the value in the technology: 60% of participants in Stanford Medicine's 2018 National Physician Poll said EHRs had led to improved patient care. At the same time, about as many (59%) said EHRs needed a "complete overhaul" and that the systems had detracted from their professional satisfaction (54%) as well as from their clinical effectiveness (49%).

In preliminary studies, Ratwani has found that doctors have a typical physiological reaction to using an EHR: stress. When he and his team shadow clinicians on the job, they use a range of sensors to monitor the doctors’ heart rate and other vital signs over the course of their shift. The physicians' heart rates will spike — as high as 160 beats per minute — on two sorts of occasions: when they are interacting with patients and when they’re using the EHR.

"Everything is so cumbersome," said Dr. Karla Dick, a family medicine physician in Arlington, Texas. "It's slow compared to a paper chart. You're having to click and zoom in and zoom out to look for stuff." With all the zooming in and out, she explained, it's easy to end up in the wrong record. "I can't tell you how many times I've had to cancel an order because I was in the wrong chart."

Among the daily frustrations for one emergency room physician in Rhode Island is ordering ibuprofen, a seemingly simple task that now requires many rounds of mouse clicking. Every time she prescribes the basic painkiller for a female patient, whether that patient is 9 or 68 years old, the prescription is blocked by a pop-up alert warning her that it may be dangerous to give the drug to a pregnant woman. The physician, whose institution does not allow her to comment on the systems, must then override the warning with yet more clicks. "That’s just the tiniest tip of the iceberg," she said.

What worries the doctor most is the ease with which diligent, well-meaning physicians can make serious medical errors. She noted that the average ER doc will make 4,000 mouse clicks over the course of a shift, and that the odds of doing anything 4,000 times without an error is small. "The interfaces are just so confusing and clunky," she added. "They invite error … it's not a negligence issue. This is a poor tool issue."

Many of the EHR makers acknowledge physician burnout is real and say they're doing what they can to lessen the burden and enhance user experience. Dr. Sam Butler, a pulmonary critical care specialist who started working at Epic in 2001, leads those efforts at the Wisconsin-based company. When doctors get more than 100 messages per week in their in-basket (akin to an email inbox), there's a higher likelihood of burnout. Butler's team has also analyzed doctors' electronic notes — they're twice as long as they were nine years ago, and three to four times as long as notes in the rest of the world. He said Epic uses such insights to improve the client experience. But coming up with fixes is difficult because doctors "have different viewpoints on everything," he said. (KHN and Fortune made multiple requests to interview Epic CEO Judy Faulkner, but the company declined to make her available. In a trade interview in February, however, Faulkner said that EHRs were unfairly blamed for physician burnout and cited a study suggesting that there's little correlation between burnout and EHR satisfaction. Executives at other vendors noted that they're aware of usability issues and that they're working on addressing them.)

The average ER doctor will make 4,000 mouse clicks over the course of a shift; the odds of doing that without an error are slim.

—an emergency physician who's not permitted to comment on the EHR systems
 

"It's not that we’re a bunch of Luddites who don’t know how to use technology," said the Rhode Island ER doctor. "I have an iPhone and a computer and they work the way they're supposed to work, and then we're given these incredibly cumbersome and error-prone tools. This is something the government mandated. There really wasn't the time to let the cream rise to the top; everyone had to jump in and pick something that worked and spend tens of millions of dollars on a system that is slowly killing us."

$36 Billion And Change
 

The effort to digitize America’s health records got its biggest push in a very low moment: the financial crisis of 2008. In early December of that year, Obama, barely four weeks after his election, pitched an ambitious economic recovery plan. "We will make sure that every doctor's office and hospital in this country is using cutting-edge technology and electronic medical records so that we can cut red tape, prevent medical mistakes and help save billions of dollars each year," he said in a radio address.

The idea had already been a fashionable one in Washington. Former House Speaker Newt Gingrich was fond of saying it was easier to track a FedEx package than one's medical records. Obama’s predecessor, President George W. Bush, had also pursued the idea of wiring up the country's health system. He didn’t commit much money, but Bush did create an agency to do the job: the Office of the National Coordinator.

In the depths of recession, the EHR conceit looked like a shovel-ready project that only the paper lobby could hate. In February 2009, legislators passed the HITECH Act, which carved out a hefty chunk of the massive stimulus package for health information technology. The goal was not just to get hospitals and doctors to buy EHRs, but rather to get them using them in a way that would drive better care. So lawmakers devised a carrot-and-stick approach: Physicians would qualify for federal subsidies (a sum of up to nearly $64,000 over a period of years) only if they were "meaningful users" of a government-certified system. Vendors, for their part, had to develop systems that met the government’s requirements.

They didn’t have much time, though. The need to stimulate the economy, which meant getting providers to adopt EHRs quickly, "presented a tremendous conundrum," said Farzad Mostashari, who joined the ONC as deputy director in 2009 and became its leader in 2011: The ideal — creating a useful, interoperable, nationwide records system — was "utterly infeasible to get to in a short time frame."

That didn't stop the federal planners from pursuing their grand ambitions. Everyone had big ideas for the EHRs. The FDA wanted the systems to track unique device identifiers for medical implants, the Centers for Disease Control and Prevention wanted them to support disease surveillance, CMS wanted them to include quality metrics and so on. "We had all the right ideas that were discussed and hashed out by the committee," said Mostashari, "but they were all of the right ideas."

Not everyone agreed, though, that they were the right ideas. Before long, "meaningful use" became pejorative shorthand to many for a burdensome government program — making doctors do things like check a box indicating a patient's smoking status each and every visit.

The EHR vendor community, then a scrappy $2 billion industry, griped at the litany of requirements but stood to gain so much from the government's $36 billion injection that it jumped in line. As Rusty Frantz, CEO of EHR vendor NextGen Healthcare, put it: "The industry was like, 'I've got this check dangling in front of me, and I have to check these boxes to get there, and so I’m going to do that.'"

Halamka, who was an enthusiastic backer of the initiative in both the Bush and Obama administrations, blames the pressure for a speedy launch as much as the excessive wish list. "To go from a regulation to a highly usable product that is in the hands of doctors in 18 months, that’s too fast," he said. "It's like asking nine women to have a baby in a month."

Several of those who worked on the project admit the rollout was not as easy or seamless as they'd anticipated, but they contend that was never the point. Aneesh Chopra, appointed by Obama in 2009 as the nation's first chief technology officer, called the spending a "down payment" on a vision to fundamentally change American medicine — creating a digital infrastructure to support new ways to pay for health services based on their quality and outcomes.

Dr. Bob Kocher, a physician and star investor with venture capital firm Venrock, who served in the Obama administration from 2009 to 2011 as a health and economic policy adviser, not only defends the rollout then but also disputes the notion that the government initiative has been a failure at all. "EHRs have totally lived up to the hype and expectations," he said, emphasizing that they also serve as a technology foundation to support innovation on everything from patients accessing their medical records on a smartphone to AI-driven medical sleuthing. Others note the systems' value in aggregating medical data in ways that were never possible with paper — helping, for example, to figure out that contaminated water was poisoning children in Flint, Mich.

But Rusty Frantz heard a far different message about EHRs — and, more important, it was coming from his own customers.

The Stanford-trained engineer, who in 2015 became CEO of NextGen, a $500-million-a-year EHR heavyweight in the physician-office market, learned the hard way about how his product was being viewed. As he stood at the podium at his first meeting with thousands of NextGen customers at Las Vegas' Mandalay Bay Resort, just four months after getting the job, he told KHN and Fortune, "People were lining up at the microphones to yell at us: 'We weren't delivering stable software! The executive team was inaccessible! The service experience was terrible!'" (He now refers to the event as "Festivus: the airing of the grievances.")

Frantz had bounced around the healthcare industry for much of his career, and from the nearby perch of a medical device company, he watched the EHR incentive bonanza with a mix of envy and slack-jawed awe. "The industry was moving along in a natural Darwinist way, and then along came the stimulus," said Frantz, who blames the government's ham-handed approach to regulation. "The software got slammed in, and the software wasn't implemented in a way that supported care," he said. "It was installed in a way that supported stimulus. This company, we were complicit in it, too."

Even that may be a generous description. KHN and Fortune found a trail of lawsuits against the company, stretching from White Sulphur Springs, Mont., to Neillsville, Wis. Mary Rutan Hospital in Bellefontaine, Ohio, sued NextGen (formerly called Quality Systems) in federal court in 2013, arguing that it experienced hundreds of problems with the "materially defective" software the company had installed in 2011.

A consultant hired by the hospital to evaluate the NextGen system, whose 60-page report was submitted to the court, identified "many functional defects" that he said rendered the software "unfit for its intended purpose." Some patient information was not accurately recorded, which had the potential, the consultant wrote, "to create major patient care risk which could lead to, at a minimum, inconvenience, and at worst, malpractice or even death."

Glitches at Mary Rutan included incidents in which the software would apparently change a patient's gender at random or lose a doctor's observations after an exam, the consultant reported. The company, he found, sometimes took months to address issues: One IT ticket, which related to a physician's notes inexplicably deleting themselves, reportedly took 10 months to resolve. (The consultant also noted that similar problems appeared to be occurring at as many as a dozen other hospitals that had installed NextGen software.)

The Ohio hospital, which paid more than $1.5 million for its EHR system, claimed breach of contract. NextGen responded that it disputed the claims made in the lawsuit and that the matter was resolved in 2015 "with no findings of fact by a court related to the allegations." The hospital declined to comment.

At the time, as it has been since then, NextGen's software was certified by the government as meeting the requirements of the stimulus program. By 2016, NextGen had more than 19,000 customers who had received federal subsidies.

NextGen was subpoenaed by the Department of Justice in December 2017, months after becoming the subject of a federal investigation led by the District of Vermont. Frantz tells KHN and Fortune that NextGen is cooperating with the investigation. "This company was not dishonest, but it was not effective four years ago," he said. Frantz also emphasized that NextGen has "rapidly evolved" during his tenure, earning five industry awards since 2017, and that customers have "responded very positively."

Glen Tullman, who until 2012 led Allscripts, another leading EHR vendor that benefited royally from the stimulus and that has been sued by numerous unhappy customers, admitted that the industry's race to market took priority over all else.

"It was a big distraction. That was an unintended consequence of that," Tullman said. "All the companies were saying, This is a one-time opportunity to expand our share, focus everything there, and then we'll go back and fix it." The Justice Department has opened a civil investigation into the company, Securities and Exchange Commission filings show. Allscripts said in an email that it cannot comment on an ongoing investigation, but that the civil investigations by the Department of Justice relate to businesses it acquired after the investigations were opened.

Much of the marketing mayhem occurred because federal officials imposed few controls over firms scrambling to cash in on the stimulus. It was a gold rush — and any system, it seemed, could be marketed as "federally approved." Doctors could shop for bargain-price software packages at Costco and Walmart's Sam's Club — where eClinicalWorks sold a "turnkey" system for $11,925 — and cash in on the government's adoption incentives.

The top-shelf vendors in 2009 crisscrossed the country on a "stimulus tour" like rock groups, gigging at some 30 cities, where they offered doctors who showed up to hear the pitch "a customized analysis" of how much money they could earn off the government incentives. Following the same playbook used by pharmaceutical companies, EHR sellers courted doctors at fancy dinners in ritzy hotels. One enterprising software firm advertised a "cash for clunkers" deal that paid $3,000 to doctors willing to trade in their current records system for a new one. Athenahealth held "invitation only" dinners at luxury hotels to advise doctors, among other things, how to use the stimulus to get paid more and capture available incentives. Allscripts offered a no-money-down purchase plan to help doctors "maximize the return on your EHR investment." (An Athena­health spokesperson said the company’s "dinners were educational in nature and aimed at helping physicians navigate the government program." Allscripts did not respond directly to questions about its marketing practices, but said it "is proud of the software and services [it provides] to hundreds of thousands of caregivers across the globe.")

EHRs were supposed to reduce healthcare costs, at least in part by preventing duplicative tests. But as the federal government opened the stimulus tap, many raised doubts about the promised savings. Advocates bandied about a figure of $80 billion in cost savings even as congressional auditors were debunking it. While the jury's still out, there's growing suspicion the digital revolution may potentially raise healthcare costs by encouraging overbilling and new strains of fraud and abuse.

In September 2012, following press reports suggesting that some doctors and hospitals were using the new technology to improperly boost their fees, a practice known as "upcoding," then-Health and Human Services chief Kathleen Sebelius and Attorney General Eric Holder warned the industry not to try to "game the system."

There's also growing evidence that some doctors and health systems may have overstated their use of the new technology to secure stimulus funds, a potentially enormous fraud against Medicare and Medicaid that likely will take many years to unravel. In June 2017, the HHS inspector general estimated that Medicare officials made more than $729 million in subsidy payments to hospitals and doctors that didn't deserve them.

Individual states, which administer the Medicaid portion of the program, haven’t fared much better. Audits have uncovered overpayments in 14 of 17 state programs reviewed, totaling more than $66 million, according to inspector general reports.

Last month, Sen. Chuck Grassley, an Iowa Republican who chairs the Senate Finance Committee, sharply criticized CMS for recovering only a tiny fraction of these bogus payments, or what he termed a "spit in the ocean."

EHR vendors have also been accused of egregious and patient-endangering acts of fraud as they raced to cash in on the stimulus money grab. In addition to the U.S. government's $155 million False Claims Act settlement with eClinicalWorks noted above, the federal government has reached a second settlement over similar charges against another large vendor, Tampa-based Greenway Health. In February, that company settled with the government for just over $57 million without denying or admitting wrongdoing. "These are cases of corporate greed, companies that prioritized profits over everything else," said Christina Nolan, the U.S. attorney for the District of Vermont, whose office led the cases. (In a response, Greenway Health did not address the charges or the settlement but said it was "committing itself to being the standard-bearer for quality, compliance, and transparency.")

Tower Of Babel
 

In early 2017, Seema Verma, then the country's newly appointed CMS administrator, went on a listening tour. She visited doctors around the country, at big urban practices and tiny rural clinics, and from those front-line physicians she consistently heard one thing: They hated their electronic health records. "Physician burnout is real," she told KHN and Fortune. The doctors spoke of the difficulty in getting information from other systems and providers, and they complained about the government's reporting requirements, which they perceived as burdensome and not meaningful.

What she heard then became suddenly personal one summer day in 2017, when her husband, himself a physician, collapsed in the airport on his way home to Indianapolis after a family vacation. For a frantic few hours, the CMS administrator fielded phone calls from first responders and physicians — Did she know his medical history? Did she have information that could save his life? — and made calls to his doctors in Indiana, scrambling to piece together his record, which should have been there in one piece. Her husband survived the episode, but it laid bare the dysfunction and danger inherent in the existing health information ecosystem.

The notion that one EHR should talk to another was a key part of the original vision for the HITECH Act, with the government calling for systems to be eventually interoperable.

What the framers of that vision didn't count on were the business incentives working against it. A free exchange of information means that patients can be treated anywhere. And though they may not admit it, many health providers are loath to lose their patients to a competing doctor's office or hospital. There's a term for that lost revenue: "leakage." And keeping a tight hold on patients' medical records is one way to prevent it.

There's a ton of proprietary value in that data, said Blumenthal, who now heads the Commonwealth Fund, a philanthropy that does health research. Asking hospitals to give it up is "like asking Amazon to share their data with Walmart," he said.

Blumenthal acknowledged that he failed to grasp these perverse business dynamics and foresee what a challenge getting the systems to talk to one another would be. He added that forcing interoperability goals early on, when 90% of the nation’s providers still didn't have systems or data to exchange, seemed unrealistic. "We had an expression: They had to operate before they could interoperate," he said.

In the absence of true incentives for systems to communicate, the industry limped along; some providers wired up directly to other select providers or through regional exchanges, but the efforts were spotty. A Cerner-backed interoperability network called CommonWell formed in 2013, but some companies, including dominant Epic, didn't join. ("Initially, Epic was neither invited nor allowed to join," said Sumit Rana, senior vice president of R&D at Epic. Jitin Asnaani, executive director of CommonWell countered, "We made repeated invitations to every major EHR … and numerous public and private invitations to Epic.")

Epic then supported a separate effort to do much the same.

Last spring, Verma attempted to kick-start the sharing effort and later pledged a war on "information blocking," threatening penalties for bad actors. She has promised to reduce the documentation burden on physicians and end the gag clauses that protect the EHR industry. Regarding the first effort at least, "there was consensus that this needed to happen and that it would take the government to push this forward," she said. In one sign of progress last summer, the dueling sharing initiatives of Epic and Cerner, the two largest players in the industry, began to share with each other — though the effort is fledgling.

When it comes to patients, though, the real sharing too often stops. Despite federal requirements that providers give patients their medical records in a timely fashion, in their chosen format and at low cost (the government recommends a flat fee of $6.50 or less), patients struggle mightily to get them. A 2017 study by researchers at Yale found that of America's 83 top-rated hospitals, only 53% offer forms that provide patients with the option to receive their entire medical record. Fewer than half would share records via email. One hospital charged more than $500 to release them.

Sometimes the mere effort to access records leads to court. Jennifer De Angelis, a Tulsa attorney, has frequently sparred with hospitals over releasing her clients' records. She said they either attempt to charge huge sums for them or force her to obtain a court order before releasing them. De Angelis added that she sometimes suspects the records have been overwritten to cover up medical mistakes.

Consider the case of 5-year-old Uriah R. Roach, who fractured and cut his finger on Oct. 2, 2014, when it was accidentally slammed in a door at school. Five days later, an operation to repair the damage went awry, and he suffered permanent brain damage, apparently owing to an anesthesia problem. The Epic electronic medical file had been accessed more than 76,000 times during the 22 days the boy was in the hospital, and a lawsuit brought by his parents contended that numerous entries had been "corrected, altered, modified and possibly deleted after an unexpected outcome during the induction of anesthesia." The hospital denied wrongdoing. The case settled in November 2016, and the terms are confidential.

More than a dozen other attorneys interviewed cited similar problems, especially with gaining access to computerized "audit trails." In several cases, court records show, government lawyers resisted turning over electronic files from federally run hospitals. That happened to Russell Uselton, an Oklahoma lawyer who represented a pregnant teen admitted to the Choctaw Nation Health Care Center in Talihina, Okla. Shelby Carshall, 18, was more than 40 weeks pregnant at the time. Doctors failed to perform a cesarean section, and her baby was born brain-damaged as a result, she alleged in a lawsuit filed in 2017 against the U.S. government. The baby began having seizures at 10 hours old and will "likely never walk, talk, eat, or otherwise live normally," according to pleadings in the suit. Though the federal government requires hospitals to produce electronic health records to patients and their families, Uselton had to obtain a court order to get the baby's complete medical files. Government lawyers denied any negligence in the case, which is pending.

"They try to hide anything from you that they can hide from you," said Uselton. "They make it extremely difficult to get records, so expensive and hard that most lawyers can't take it on," he said.

Nor, it seems, can high-ranking federal officials. When Seema Verma's husband was discharged from the hospital after his summer health scare, he was handed a few papers and a CD-ROM containing some medical images — but missing key tests and monitoring data. Said Verma, "We left that hospital and we still don't have his information today." That was nearly two years ago.

For more on this ongoing probe, including videos and additional reporting, visit fortune.com/longform/medical-records and khn.org/ehr.

A ruling against a Medicaid work requirement would have vast repercussions in states that have been approved for the mandate.

This article was first published on Thursday, March 14 in Kaiser Health News.

By Phil Galewitz

The federal judge who shot down a Medicaid work requirement plan last June remained deeply skeptical Thursday of the Trump administration's renewed strategy to force enrollees to work.

U.S. District Judge James Boasberg, who last year blocked Kentucky's work requirement, heard testimony on a revised federal approval. He also had a hearing on Arkansas' Medicaid work requirement — which took effect last July and has led to 18,000 Medicaid enrollees losing coverage.

After the court hearings in Washington, Boasberg said he would rule on both states' programs by April 1, which is when the next round of Arkansas enrollees could be kicked off the program. Kentucky plans to implement its work requirement this summer.

A ruling against a work requirement would have vast repercussions in more than a dozen other states that have been approved for new work requirements in Medicaid, the federal-state health program, or are seeking them from the Trump administration.

Throughout the two-hour-long hearings, Boasberg questioned Justice Department lawyer James Burnham on whether the work requirement plans approved by the Trump administration were helping to achieve Medicaid's goal of promoting health coverage.

When Burnham argued that work requirements would give people incentives to find work and improve their lives, Boasberg interjected: "That is not the purpose of Medicaid."

On Capitol Hill, Democrats grilled Health and Human Services Secretary Alex Azar about the work requirements. Azar testified this week before three separate committees, two in the House and one in the Senate, on the administration's budget request for the department.

Addressing the Senate Finance Committee on Thursday, Azar disputed the idea that everyone who lost Medicaid in Arkansas was now uninsured. "Only 1,000 of those 18,000 people appealed" their loss of Medicaid, he said. "Only 1,452 of those 18,000 even reapplied for Medicaid when open enrollment came again."

Azar said that "seems a fairly strong indication" that the rest of those cut from the program "got a job and insurance elsewhere."

Top health officials for the Trump administration have said getting people on Medicaid into jobs will make them healthier — which they call a key goal of the program.

States can implement work requirements since Congress has given the HHS secretary permission to approve their experiments with the Medicaid program, the administration asserts.

But advocates for the poor say an experiment that leaves thousands of people without coverage runs counter to Medicaid's aim to improve access to healthcare.

In his ruling last year, Boasberg, who was appointed by President Barack Obama, said Azar's approval of Kentucky's plan failed to consider whether the strategy would "help the state furnish medical assistance to its citizens, a central objective of Medicaid."

He said promoting health generally or helping someone get a job was not the point of the state-federal program created in 1965.

Kentucky last year became the first state to win federal approval for its proposal requiring that certain Medicaid recipients work, go to school or fulfill community service. After Boasberg’s ruling last June, the state filed a new waiver application seeking to meet the judge’s requirements, and the Trump administration approved it.

Federal officials have approved work requirement proposals in seven states — Arizona, Arkansas, Indiana, Kentucky, Michigan, New Hampshire and Wisconsin. In each of those states, the requirements would apply only to people who gained Medicaid coverage under the expansion promoted by the Affordable Care Act.

Ten other states — Alabama, Kansas, Mississippi, Ohio, Oklahoma, South Carolina, South Dakota, Tennessee, Utah and Virginia — also have requested approval. Some of those states have not expanded Medicaid and are seeking to add work requirements to their regular programs.

Kentucky Gov. Matt Bevin, a Republican, has threatened to scrap the Medicaid expansion unless his state is allowed to proceed with the new rules, a move that would cause the more than 400,000 new enrollees to lose their coverage. He said the work requirement will help move some adults off the program so the state has enough money to help others on the program.

Boasberg questioned whether the state has proven its case to the federal government that it needs work requirements to keep its Medicaid program financially sustainable. "At the end of the day, isn't the centerpiece of your case the fiscal sustainability argument?" Boasberg asked the Trump administration’s lawyer.

Burnham argued neither Kentucky nor Arkansas was kicking people off their programs and causing them to lose benefits. He said people were just choosing to not comply with the state's new reporting requirements to show they were working, doing volunteer work or meeting one of the states' exceptions.

Ian Gershengorn, a lawyer representing the National Health Law Program and other plaintiffs trying to overturn the work requirements, said Kentucky’s financial sustainability argument "seems absurd" because the federal government this year is paying 94% of the costs for the Medicaid expansion population.

He said HHS should not be approving Kentucky's waiver based on the governor threatening to kill the entire Medicaid expansion if he doesn't get work requirement authority.

Gershengorn said Azar cannot argue in approving Kentucky's waiver that he has no idea how many people would lose coverage since the Arkansas experience already shows thousands lost Medicaid coverage.

The Kaiser Family Foundation has estimated that 1.4 million to 4 million Americans could lose their coverage if work requirements were imposed nationwide. Most of the coverage losses would result from enrollees failing to report their compliance to the state, not because they were failing to fulfill the work or job search criteria. (Kaiser Health News is an editorially independent program of the foundation.)

The Justice Department attorney tried to show the difference between the first Kentucky approval in January 2018 and the second one made last November was that the HHS secretary analyzed what effect the experiment would have on health coverage. He said keeping the Kentucky program would ensure the expansion stayed in place as well as give adult enrollees access to vision and dental coverage.

But Gershengorn argued the difference between the two approvals is that the state and the federal government now know the implications work requirements can have on enrollees.

"There is massive harm," Gershengorn said. "It is not speculative."

KHN chief Washington correspondent Julie Rovner contributed to this report.