Kim Johnson was nervous when she sat at the dining room table in January 2015, with 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 affected her entire family. The prospect of that happening to her was all Johnson had been able to think about since discovering a tender lump in her right breast weeks earlier, prompting her doctor to send her in for a mammogram.
If she got sick, who would continue to feed the horses and chickens on the 101-acre family farm she and her husband owned in Northeast Kentucky? Who would take care of the three young children they had recently adopted after raising their five children?
Johnson, 53 at the time, says he opened the envelope, unfolded the letter and started reading. She says her eyes were fixed on four words in the first sentence: “no evidence of cancer.”
“Oh my God,” Johnson remembers thinking. “I dodged a bullet.”
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Her husband, Delbert, choked when she called him to break the news. That night, the kids were put in the car and headed to the Tumbleweed Tex Mex Grill to celebrate.
Only, as the medical experts who reviewed his records later told him, there had been a terrible mistake.
While Johnson was dining with her family, a cancerous tumor was quietly growing inside her. The warning signs were there on the initial X-rays of her breast, enough to warrant additional testing at the very least, according to the doctors who then reviewed the images. But someone at the hospital had sent the wrong letter, Johnson’s lawyers allege, giving Johnson the go-ahead rather than directing him to return for a follow-up exam.
When Johnson discovered the discrepancy 10 months later, thanks only to her own insistence on seeking a second opinion after her chest pain worsened, her new doctors feared it was too late to save her.
Johnson didn’t know it at the time, but this was the beginning of a year-long battle with not just a deadly disease, but with a healthcare system and medical workers who, according to Johnson’s attorneys, did their best to cover up their mistake.
Johnson, who describes herself as “not a suing person,” eventually sued because she wanted to know why her cancer was not found earlier. It took three years of litigation before Johnson, his attorneys, and a digital forensic expert who reviewed his 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 his electronic records and edited them, removing evidence from the erroneous letter that claimed he did not have cancer, Johnson’s attorneys say.
The hospital then created bogus letters and produced them as part of the court case that purported to have ordered Johnson to seek additional evidence, Johnson alleges in court documents. When questioned under oath, the doctor who had been overseeing Johnson’s medical care pointed to the newly generated letters as evidence that Johnson was to blame for his own delay in treatment, court records show.
Andrew Garrett, the forensic expert who reviewed Johnson’s medical records on his behalf, has worked hundreds of malpractice cases, involving both patients and hospitals, to find evidence buried in electronic records. He described cases like Johnson’s as a “smoking gun” hidden in the records.
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A spokeswoman for LifePoint Health, the hospital chain that bought Fleming County Hospital seven months after Johnson’s 2015 mammogram, declined to comment, noting that Johnson’s lawsuit is still pending before the Kentucky Supreme Court.
Attorneys 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 used for mammograms at the time already not working and was prone to failure. The hospital has acknowledged a discrepancy in Johnson’s medical records, but said it was the result of “clerical error” by an employee who mistook Johnson for another patient with the same last name.
The hospital hired an independent digital forensic expert to review Johnson’s medical history, as Garrett did, but the hospital did not present the findings in court, according to court records.
Johnson’s lawyers said they do not believe the hospital’s explanations. Neither is his family.
“I tend to trust the doctors and the professionals, even the system,” Delbert Johnson said. “But they failed Kim and tried to hide it.”
The cover-up alleged in Johnson’s lawsuit highlights a growing threat patients face in the age of electronic medical records: the possible manipulation of their records by healthcare providers to hide errors and minimize liability.
NBC News spoke with more than 20 patient advocates, expert witnesses, and malpractice attorneys who described dozens of cases from the past decade that relied on discovering edits made to a patient’s record. In some cases, the nurses’ notes have been removed. In others, procedures that the patient should have had, but did not, were recorded after their death, painting a false picture of the care they received. Collectively, the patients in those cases or their surviving families received tens of millions of dollars in damages.
As in Johnson’s case, these edits are often only discovered through strenuous and costly efforts by medical malpractice attorneys and digital forensic experts to gain access to what is known as the “audit trail” of the record. patient, which shows who accessed the record and how they modified it.
It’s impossible to know the full scale of the problem – healthcare providers almost always require patients or their families to sign a nondisclosure agreement as a condition of any legal agreement. And hospitals routinely fight to prevent audit records from being brought to court, arguing that the records are so complex that it is too costly and burdensome for healthcare providers to disclose them.
“Cases are literally doubling in complexity because of these issues,” said Matthew Keris, a Pennsylvania attorney who specializes in defending healthcare providers in malpractice lawsuits. He argues that audit trails rarely reveal evidence that is significant to a case. However, hospitals like the ones he represents often end up spending tens of thousands of dollars to analyze records once they are presented as evidence, unnecessarily increasing the cost of litigation and benefiting no one.
But some experts say cases like Johnson’s are more common than people think.
Garrett, the forensic expert, is one of the few specialists in the United States with experience in this emerging technical field. He said his firm has worked on roughly 500 medical malpractice cases over seven years and has found significant alterations in the patient’s history that favored the hospital in 85 percent of them.
In about a quarter of them, the revision history reveals what Garrett describes as a “total cover-up.”
A grim prognosis
Although the January 2015 letter initially eased Johnson’s fears of cancer, it did nothing to stop the pain in her right breast. Her primary care physician, Dr. Amanda Applegate, had told her that it was probably a staph infection and that it would be cured with antibiotics.
Applegate, which ordered Johnson’s mammogram, acknowledged in a 2017 statement that it never followed up on the results, arguing that it was the responsibility of the radiologist who took the scans to share the findings with Johnson. Applegate and his attorneys did not respond to messages seeking comment.
Unaware that her mammogram had indicated the need for additional testing, Johnson spent nine months trying different prescriptions to treat the infection, but the lump in her breast continued to grow. Finally, in September 2015, Applegate wrote you a recommendation for another opinion.
On a cloudy 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 had been dreading: The doctor told her 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 him to put his affairs in order. Depending on how far the cancer had already spread, it could only be six months old, maybe a year.