Kim Johnson was nervous as she sat down at her dining room table in January 2015, clutching an unopened letter from the radiology department at Fleming County Hospital in Flemingsburg, Kentucky.
Breast cancer had killed Johnson’s mother years earlier, a painfully slow death that took a toll on her entire family. The prospect of that happening to her was all Johnson had been able to think about since she’d discovered a tender lump in her right breast weeks before, prompting her doctor to send her for a mammogram.
If she got sick, who would keep up with feeding the horses and chickens at the 101-acre family farm that she and her husband ran in northeastern Kentucky? Who would care for the three young children they’d recently adopted after raising five kids of their own?
Johnson, 53 at the time, says she ripped open the envelope, unfolded the letter and began to read. She says her eyes fixated on four words in the first sentence: “no evidence of cancer.”
“Oh my gosh,” Johnson remembers thinking. “I dodged a bullet.”
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Her husband, Delbert, choked up when she called him with the news. That night, they loaded the kids into the car and headed to Tumbleweed Tex Mex Grill to celebrate.
Only, as medical experts who reviewed her records later told her, there’d been a terrible mistake.
As Johnson dined with her family, a cancerous tumor was silently growing inside of her. The warning signs were there in the initial X-rays of her breast — enough to warrant additional tests at the very least, according to doctors who later reviewed the images. But someone at the hospital had sent the wrong letter, Johnson’s lawyers allege, giving Johnson the all-clear instead of directing her to return for a follow-up exam.
By the time Johnson discovered the discrepancy 10 months later — thanks only to her own insistence on seeking a second opinion after the pain in her breast worsened — her new doctors feared it might be too late to save her.
Johnson didn’t know it then, but this was the start of a yearslong battle not only with a deadly disease, but with a health system and medical workers who, Johnson’s lawyers say, went to extraordinary lengths to cover up their error.
Johnson — who describes herself as “not a suing person” — ultimately filed a lawsuit because she wanted to know why her cancer wasn’t caught earlier. It took three years of litigation before Johnson, her lawyers and a digital forensics expert who reviewed her electronic patient records were able to piece together what they believe happened: In the days and weeks after Johnson filed a medical malpractice lawsuit in 2016, two hospital employees opened her electronic records and edited them, deleting evidence of the erroneous letter claiming that she was cancer-free, Johnson’s lawyers say.
The hospital then created fake letters and produced them as part of the court case purporting to have directed Johnson to seek additional tests, Johnson alleges in court filings. When questioned under oath, the doctor who’d been overseeing Johnson’s medical care pointed to the newly generated letters as evidence that Johnson was to blame for her own delay in treatment, court records show.
Andrew Garrett, the forensics expert who reviewed Johnson’s medical records on her behalf, has worked on hundreds of malpractice cases, for both patients and hospitals, to find evidence buried deep in electronic records. He described cases like Johnson’s as having a “smoking gun” hidden in the records.
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A spokeswoman for LifePoint Health, the hospital chain that purchased Fleming County Hospital seven months after Johnson’s mammogram in 2015, declined to comment, noting that Johnson’s lawsuit is still pending before the Kentucky Supreme Court.
Lawyers for the hospital chain have dismissed Johnson’s allegations in legal filings and during court hearings as “a conspiracy theory” that cannot be substantiated because the electronic record system the hospital was using for mammograms at the time is now defunct and was prone to glitches. The hospital has acknowledged one discrepancy in Johnson’s medical records but said it was the result of “a clerical error” by an employee who’d gotten Johnson confused with another patient with the same last name.
The hospital hired a separate digital forensics expert to review Johnson’s medical record, as Garrett did, but the hospital didn’t submit findings in court, according to court records.
Johnson’s lawyers said they don’t believe the hospital’s explanations. Neither does her family.
“I tend to put my trust in doctors and professionals, the system even,” Delbert Johnson said. “But they failed Kim and tried to hide it.”
The cover-up alleged in Johnson’s lawsuit highlights a growing threat facing patients in the age of electronic medical records: the potential manipulation of their records by health care providers to hide mistakes and minimize liability.
NBC News talked to more than 20 patient advocates, expert witnesses and malpractice attorneys who described dozens of cases from the last decade that hinged on the discovery of edits made to a patient’s record. In some instances, nurses’ notes had been deleted. In others, procedures the patient should have had, but didn’t, were logged after they died, painting a false picture of the care they received. Collectively, the patients in those cases or their surviving families were awarded tens of millions of dollars in damages.
As in Johnson’s case, these edits are often only uncovered through dogged and expensive efforts by medical malpractice lawyers and digital forensic experts to gain access to what is known as the “audit trail” of the patient record, which shows who accessed the record and how they modified it.
It’s impossible to know the full scale of the issue: Health care providers almost always require patients or their families to sign a nondisclosure agreement as a condition of any legal settlement. And hospitals routinely fight to suppress audit trails from being introduced in court, arguing that the records are so complex that it’s too expensive and burdensome for health care providers to release the files.
“The cases are literally doubling in complexity because of these issues,” said Matthew Keris, a Pennsylvania attorney who specializes in defending health care providers in malpractice lawsuits. He argues that audit trails rarely reveal evidence that’s significant to a case. Yet hospitals like the ones he represents often end up spending tens of thousands of dollars to analyze the records once they’re introduced as evidence, needlessly driving up the cost of litigation and benefitting no one.
But some experts say cases like Johnson’s are more common than people may think.
Garrett, the forensics expert, is one of the few specialists in the United States with expertise in this emerging technical field. He said his firm has worked on approximately 500 medical malpractice cases over seven years and has found significant alterations to the patient’s record that favored the hospital in 85 percent of them.
In about a quarter of those, the revision history reveals what Garrett describes as a “complete cover-up.”
A grim prognosis
Although the January 2015 letter initially alleviated Johnson’s fears about having cancer, it did nothing to stop the pain in her right breast. Her primary care physician, Dr. Amanda Applegate, had told her it was most likely a staph infection and would be cured with antibiotics.
Applegate, who’d ordered Johnson’s mammogram, acknowledged in a 2017 deposition that she never followed up to learn the results, arguing that it was the responsibility of the radiologist who took the scans to share the findings with Johnson. Applegate and her lawyers did not respond to messages seeking comment.
Unaware that her mammogram had indicated a need for additional testing, Johnson spent nine months trying different prescriptions to treat infection, but the lump in her breast kept growing. Finally, in September 2015, Applegate wrote her a referral for another opinion.
On an overcast fall day, Johnson drove more than 80 miles to St. Elizabeth Fort Thomas Hospital in northern Kentucky, near Cincinnati. After examining Johnson’s breast, Dr. Heidi Murley ordered an emergency biopsy. Within days, Johnson returned to the hospital to receive the diagnosis she’d been dreading: The doctor told her that she had stage 4 cancer and that it had spread from her breast to her lymph nodes and bones.
The news came with a grim prognosis. An oncologist advised her to get her affairs in order. Based on how far the cancer had already spread, she might have just six months to live — maybe a year.