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Today in health it, the story is what happens to medical data after you die? My name is Bill Russell. I'm a former CIO for a 16 hospital system and creator of this week in Health IT a channel dedicated to keeping health IT staff current. I. And engaged today, no sponsor. But at this week in health it, we have a lot of stuff going on.
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So keep an eye out for that and let us know what you think. Look forward to hearing your comments. Alright, here's today's story. I follow Bert Delon. Meko, who I think, whose name, I think I'm messing up pretty good. He is a physician, he's also a PhD. He's the director of the Medical Futurist Institute and I follow him on LinkedIn.
He writes some fascinating stuff and so on the 4th of February, he wrote a piece on what happens to your health record after you die. Interesting concept, right? So let's take a look at it. What happens to our collective health record after we die? To see for yourself? You could answer the following questions.
How familiar are you with your digital health data footprint? , do you even know about the kind of health data generated about you and where it ends up? And what happens with the ever-growing pile of information after you die? Who owns the data and who can get access to it? Why could this even be more interesting and for whom?
With the advent of digital health technologies such as chatbots, fitness trackers, and direct to consumer genetic tests. That amount of health data soars to new heights with more individuals and precise data. So you see, it's not just the EHR, we're talking chatbots, we're talking fitness trackers, we're talking genetic tests.
So there's a lot of things to consider here, although the, the EHR, the health record is part of it. So he talks a little bit about this, uh, breadcrumb concept, and I'm not gonna be able to do this whole article Justice. It's a very long article. It's really well written and it's fun and I don't want to give it all away.
I'd love for you to go out and, and read it and start to follow Dr. Bertan Meko. I think he has some great content for you. So he talks about the digital breadcrumbs and how we leave them around every day. We could leave 'em with our Apple Watch or our Fitbit. We could leave 'em with, uh, devices we have in the home with requests and questions we ask.
We might say, Hey, Alexa, where's the closest hospital? Or, help me to research chest pain, or those kind of things. That ends up being a breadcrumb as well, as well as the other breadcrumbs that are only starting to . You know, emerge, right? So there's gonna be a whole host of medical data and healthcare itself doesn't do a good job of stitching all this together today.
So post . Your life, I would imagine it's gonna be really interesting. Alright, so he talks about, uh, similarly to the digital identity feeding off the bread breadcrumbs you drop off every time you use the internet. An ever-growing Frankenstein monster evolves out of the medical data such data are collected from your birth.
But in most cases, and surprisingly enough, this pile of information doesn't belong to you. Moreover, you don't have a chance to control it. If you look at the amount of data in question, you'll . Realize the vanity of such an enterprise and that this is not a farfetched claim. You get into the universe of medical administration the moment you are born, when you end up in a hospital.
Medical professionals use charts containing notes and information for diagnosis and treatment. These go into the electronic medical record and every private and public hospital or medical facility where you receive treatment. We'll preserve some medical records of you. These generate general health records accessible by the healthcare professionals as well as personal health records, which.itory than living patients by:
As a result of this, millions of posthumous medical records are and will keep sitting around in digital and analog systems. And that already massive volume is only going to grow. So how do countries deal with these data records? And actually this is interesting 'cause he goes, he goes through 'em. So he has the US here, the situation is most complicated in the us.
Oh, is that a shock to anyone? As there's no federal law setting? Even the seemingly simple question. Who owns the patient's medical records in the states? HIPAA ensures accessibility of health records for 50 years after the patient's death. However, the usual timeframe that record holders keep them is for much shorter than that and the range for about five to 10 years after death.
The law further enables the use of the data with the access granted by the representative of the deceased, and he goes on the uk, Hungary, and India, and they all have different ways that they address that. What about the tracker data or information from genetic tests? Now you can designate a legacy contact on Facebook.
You don't necessarily . Have that option. When it comes to genetic data, one of the most direct to consumer services 23 and me previously said, they can provide genetic data about a deceased person only to an executor, personal representative or beneficiary of the deceased the state. They also highlight that those requesting such information must provide evidence and legal documentation indicating they're authorized to act on behalf of the deceased.
But 23 and me also signed a $300 million deal with Pharma Giant GSK for drug development. This deal leverages 23 and Me substantial genetic resources made possible through its customers who were oblivious that such a deal was in the pipeline. Whether or not such partnerships use the data or deceased customers.
Is unknown. Alright. And then he goes on, can you donate your health data? And some more interesting concepts there. I, I think this is a, a phenomenal article is that that's my so what? My, my simple. So what? It's a Friday. We're not gonna work too hard. My simple. So what for this Bertillon Meko writes some really cool stuff.
You should follow him. As far as my medical record, outliving me. I'm okay with that as long as my heirs have control of it, which they don't today because I don't have control of it in life. I'm not sure how they can have control of it in death. A battle worth fighting if you ask me, and we're gonna continue to fight it.
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