Your Medical Data Is Code Blue

Until last November, I had never heard of Perry Johnson and Associates. But they had heard of me. In fact, without my knowledge, they had information about me that even my closest friends and relatives might not know. Because the company provides “transcription and dictation” services to Northwell Health, a medical provider that has treated me in the past, they had access to what they refer to as “certain files containing my health information as well as other personal data.” This might have included my name, birth date, address, and medical record number, and information about my medical condition—including admission diagnosis, operative reports, physical exams, laboratory and diagnostic results, and medical history, which could include family medical history, surgical history, social history, medications, allergies, and/or other observational information.

This was all laid out to me in a letter dated November 3, 2023, informing me that at least some of my information was now in the hands of an “unauthorized party” who had penetrated their system between March and May of 2023 and apparently engaged in an undetected downloading spree. Though the letter didn’t mention it, I was one of almost 10 million people affected, out of multiple health care providers in multiple states.

The word “sorry” did not appear in the letter. But, it assured me, Perry Johnson and Associates “take(s) this incident very seriously.” What a relief! Anyway, it now was promising to “update our systems to prevent incidents of this nature from occurring in the future.” Which begs the question: Why weren’t those systems updated before?

The words “we apologize” did appear in a disturbingly similar letter I received later in November, from East River Medical Imaging. Between August 31 and September 20 its system was penetrated, and the documents that were accessed or copied might have involved my name, contact information, exam and/or procedure information, and even images from my medical tests. But East River is taking my privacy and security very seriously! Not enough apparently, to do anything to mitigate my loss. “The letter did remind me that it’s always a good idea to review health care statements to identify fees for services unreceived. Has that letter writer ever managed to decode a list of medical charges?

At least my DNA information wasn’t compromised … oh wait, I almost forgot an email I received from 23andMe in October saying that information shared with DNA relatives may have fallen in the hands of those seemingly ubiquitous unauthorized users.

Notice a pattern? Everyone knows that data like credit cards and even Social Security numbers are routinely purloined. But as medical records became digitized, we were assured that extra care would be taken to protect them. There’s even a law, known as HIPAA, to assure that those super sensitive files would stay out of the hands of cyber-villains. But that’s clearly not happening. It’s the responsibility of the US Health and Human Services Office for Civil Rights to investigate incidents affecting more than 500 people. It’s currently looking into more than 500 breaches reported last year. That’s nearly twice as many as the previous year.

That’s a huge problem because the theft of insufficiently protected medical information goes much deeper than financial risk. The remedy offered to me and millions of others by Perry Johnson was a year’s worth of identity-theft monitoring from Experian. This doesn’t begin to relate to the real risks. “There are a whole range of harms that can follow a person far beyond financial impacts when we talk about targeting people based on their health vulnerabilities.” says Andrea Downing, cofounder of an grassroots activist organization called The Light Collective, which advocates for responsible medical data stewardship. “People can be targeted based on their health vulnerabilities and become easy fodder for medical fraud.” The medical information of nearly 10 million people would be an invaluable resource to drug marketers, insurance companies, and manufacturers of bogus medical devices. And unlike personal finance information, there’s no way to make that information moot. You can get a new credit card or a new bank account, but you can’t get a new medical history.