It was a foolish notion, I see that now, I thought I had discovered a loophole, a small chink in the HIPPA rule’s armor, but I only found the same familiar loop of dead ends.
I stumbled across the idea while listening to an Audible book, “The Lives They Left Behind,” by Peter Stastny and Darby Penney. The story is nonfiction about a closed mental institution with its attic filled to the brim with past patient’s belongings, some dating as far back as the 1800s. The authors mentioned getting approval for medical records in the name of research. Research? Medical release forms of patients given to perfect strangers? Intriguing!
So, I got to work because the four lawyers (Four) I contacted, who specialized in matters relating to medical releases, had either rejected me outright or else never called me back once it was clear my case was not a malpractice pursuit. It always comes down to money, doesn’t it? Even as I said, I would pay for their time to get the information I needed. It wasn’t enough to make it worth their while. I decided to move on.
The approval I had to get was from one of two entities, The Research Privacy Board or The Institutional Review Board. But first, I had to get my Great-aunt’s health information de-identified.
Two groups can gain de-identification of someone’s medical history. The first is, of course, the Experts. Although, the standards for who the “Experts” are exactly are relaxed. Is an Expert someone working in Behavior Sciences who wears a white lab coat? Probably. Or is an Expert someone who has heard of Behavioral Science but wears a white lab coat because she works at the Mac makeup counter at Nordstrom? Maybe.
Under Experts, the rules are straightforward. One could get permission for health records if the records are used for statistics or scientific principles (whatever those are).
The Expert must ensure the information gained has a minimal risk that anyone could identify a patient. Easy-peasy, right? Sure, if you wear a lab coat of some kind (let me know if you’re a dentist, or a dental hygienist and are willing to help me out, will you?)
The other camp is even more general, under the title, “Safe Harbor,” which I guess is anybody not associated with science or makeup application—in other words, me!
As for the Safe Harbor method, one must promise to remove eighteen specific personal identifiers of a patient and make sure that nothing is left behind to link anyone else to that patient. Okay, that’s a little harder to do.
The list of eighteen identifiers is sometimes more of a paragraph detailing any possible link within a category, such as no names of a person, their relatives, their employees, or members of their household in the past, present, or future. Hmmm.
I am looking for the medical records of my distant relative. This is what my whole story is about! Also, my grandpa was her brother, who lived in her household. Strike two!
What’s more, I cannot use any address where Glenna may have lived (past, present, or future) if the given address is smaller than a state. Smaller than a state? Glenna was a resident in State Hospital South. I believe this hospital is smaller than the state of Idaho.
Besides the standard personal identifiers like her once phone number, her social security number, her address, or fax number, email, or URL (if she had any of those) etc. etc. etc., I cannot use any specific dates that have to do with Glenna!
For her date of birth, I have to say she was born approximately in the early 1900s, instead of 1916. I also can’t give the year she died.
Even though the timing of her hospital stay directly correlates with the height of Lobotomies, as well as the multitudes of torturous experimentations worthy of Sci-fi-Horror, I can’t put dates or specify years, essential details to explain what happened to Glenna (and to all the other people living in mental institutions) or why they might have happened!
To get special approval, I can’t spill the year Glenna was admitted to the hospital or when she was discharged because those might be able to pinpoint who I’m talking about.
Guess what else that means when it comes to her ailments and diagnosis? Yep, I can’t talk about those either! What’s the point of me doing any research at all? What’s the point of me telling Glenna’s story?
Without any of these identifiers, this is how my story would go: I may or may not have had a distant relative that may or may not have had some issues that could or could not pertain to ill health in this person’s past, present, or future, who went away somewhere for some time, for some reason, once. The End. Ironically, this story is the one I grew up knowing!
So, here is where I sit, now. There is no loophole. HIPPA will continue to protect not the patients (although this is what one is led to believe) but to safeguard themselves as well as any conglomerate surrounding a patient’s care, like the hospital or health insurance companies.
What’s worse, Glenna and the story she was given, the silence she has been shrouded in and hidden behind is still as prevalent and densely guarded as ever before. Plus, just like it was for her in her young life, she’s still not getting any kind of help even in her death! What does this all mean? It just ticks me off, but it doesn’t mean it’s going to stop me!
*If you know of any way to help me tell Glenna’s story, please write me!