Kim Johnson was nervous as she sat at the dining room table in January 2015, holding a closed letter from the radiology department at Fleming County Hospital in Flemingsburg, Kentucky.
Breast cancer killed Johnson’s mother years ago, a painfully slow death that affected his entire family. The prospect of this happening to her was all Johnson had been able to think about since she discovered a sensitive lump in her right breast weeks before, prompting her doctor to send her for a mammogram.
If she got sick, who would continue to feed the horses and chickens on the 101-acre family farm that she and her husband ran in northeastern Kentucky? Who would take care of the three children they recently adopted after raising their own five children?
Johnson, 53 at the time, says he tore the envelope, unfolded the letter and started reading. She says her eyes were fixed on four words from the first sentence: “no evidence of cancer”.
“Oh my God,” Johnson remembers thinking. “I dodged a bullet.”
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Her husband, Delbert, gasped when she called him with the news. That night, they put the kids in the car and headed to the Tumbleweed Tex Mex Grill to celebrate.
Only, as the medical experts who reviewed her records later told her, there was a terrible mistake.
While Johnson was dining with his family, a cancerous tumor grew silently 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 doctors who later reviewed the images. But someone at the hospital had sent the wrong letter, Johnson’s lawyers claim, giving Johnson permission instead of directing her to return for a follow-up exam.
When Johnson discovered the discrepancy 10 months later – thanks only to his own insistence on seeking a second opinion after the pain in his chest got worse – his new doctors feared it might be too late to save it.
Johnson didn’t know it at the time, but this was the beginning of a battle of years not only against a deadly disease, but also against a health care system and medical professionals who, Johnson’s lawyers say, did everything they could to cover up their mistake.
Johnson – who describes himself as “not a person suing” – ended up filing a lawsuit because she wanted to know why her cancer had not been detected before. It took three years of litigation before Johnson, his lawyers and a digital forensic expert who reviewed his electronic patient records could bring together what they believe happened: in the days and weeks after Johnson filed a medical malpractice lawsuit in 2016, two employees A hospital employee opened her electronic records and edited them, excluding evidence from the erroneous letter alleging she was cancer-free, Johnson’s lawyers say.
The hospital then created fake letters and produced them as part of the lawsuit that allegedly instructed Johnson to seek additional examinations, Johnson claims in lawsuits. When questioned under oath, the doctor who supervised 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 specialist who reviewed Johnson’s medical records on his behalf, worked on hundreds of cases of negligence, both for patients and for hospitals, to find evidence buried 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 chain of hospitals 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.
Hospital network lawyers dismissed Johnson’s claims in court cases and during court hearings as “a conspiracy theory” that cannot be proven because the electronic registration system the hospital was using for mammograms is now extinct and subject to to failures. The hospital acknowledged a discrepancy in Johnson’s medical records, but said it was the result of “an administrative error” by an employee who mistook Johnson for another patient with the same last name.
The hospital hired a separate digital forensic specialist to review Johnson’s medical record, as Garrett did, but the hospital did not present the findings to the court, according to court records.
Johnson’s lawyers said they did not believe the hospital’s explanations. Not your family.
“I usually put my trust in doctors and professionals, even in the system,” said Delbert Johnson. “But they failed with Kim and tried to hide it.”
The alleged cover-up in the Johnson case highlights a growing threat that patients face in the era of electronic medical records: the potential manipulation of their records by healthcare professionals to hide errors and minimize responsibilities.
NBC News spoke to more than 20 patient advocates, expert witnesses and lawyers who described dozens of cases in the past decade that depended on discovering edits made to a patient’s record. In some cases, the nurses’ notes were deleted. In others, the procedures that the patient should have done, but did not do, were recorded after death, painting a false picture of the care he received. Collectively, patients in these cases or their surviving families received tens of millions of dollars in damages.
As in Johnson’s case, these editions are often only discovered through stubborn and costly efforts by medical malpractice lawyers and digital forensics to gain access to what is known as an “audit trail” in the patient record, which shows who accessed the registry and how they modified it.
It is impossible to know the full extent of the problem: healthcare professionals almost always require patients or their families to sign a confidentiality contract as a condition of any legal agreement. And hospitals routinely struggle to prevent audit trails from being introduced in court, arguing that the records are so complex that it is very expensive and costly for healthcare professionals to release the files.
“Cases are literally doubling in complexity because of these issues,” said Matthew Keris, a Pennsylvania lawyer who specializes in defending healthcare providers in medical malpractice lawsuits. He argues that audit trails rarely reveal significant evidence for a case. Even so, hospitals like the ones he represents usually end up spending tens of thousands of dollars to analyze the records, since they are presented as evidence, unnecessarily increasing the cost of litigation and benefiting no one.
But some experts say that cases like Johnson’s are more common than people might think.
Garrett, the forensic specialist, is one of the few specialists in the United States with experience in this emerging technical field. He said his company worked on about 500 cases of medical malpractice over the course of seven years and found significant changes in the patient’s record that favored the hospital in 85 percent of them.
In about a quarter of them, the revision history reveals what Garrett describes as a “complete cover-up”.
A gloomy prognosis
Although the January 2015 letter initially eased Johnson’s fears about cancer, it did nothing to stop the pain in her right breast. Her primary care physician, Dr. Amanda Applegate, told her that a staph infection was more likely and would be cured with antibiotics.
Applegate, who had ordered Johnson’s mammogram, acknowledged in a 2017 testimony that she never had the follow-up to know the results, arguing that it was the responsibility of the radiologist who made the tests share the findings with Johnson. Applegate and his lawyers did not respond to messages asking for comment.
Unaware that his mammogram indicated the need for additional tests, Johnson spent nine months experimenting with different prescriptions to treat the infection, but the lump in his breast continued to grow. Finally, in September 2015, Applegate wrote her a recommendation for another opinion.
On a cloudy autumn day, Johnson drove more than 80 miles to St. Elizabeth’s Fort Thomas Hospital in northern Kentucky, near Cincinnati. After examining Johnson’s breast, Dr. Heidi Murley requested an emergency biopsy. A few days later, Johnson returned to the hospital to receive the diagnosis he feared: the doctor told her that she had stage 4 cancer and that it had spread from the breast to the lymph nodes and bones.
The news came with a bleak prognosis. An oncologist advised her to get her affairs in order. Based on how far the cancer had spread, she could have only six months to live – perhaps a year.