Polluting the Digital Record

JudiBlueHen

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I intend this post to be a discussion of the electronic health records mandated in the US and elsewhere: their purpose, extent, and use, and our ability to influence this record.

But first, a personal anecdote about the digital record in general, and its power to complicate our lives. About 2 years ago we moved to a new house on a new street, in a subdivision that was platted about a decade ago. Our street was on the plat but the street sign had not yet been erected. As one of the two first households on this street, we put in a “change of address” to get our mail forwarded. This was the beginning of a one-year uphill battle to get our mail delivered and our address changed at every bank, utility, credit provider, agency, and any other bureaucracy with which we might correspond.

You see, the USPS (United States Postal Service) “owns” the master address database and most providers use that database to establish the validity of everyone’s address. In our case, the provider who designated our street name and number was in fact the postal carrier. He looked at the mailbox on the new street and decided it was a continuation of the existing street “X” and hence our address must be “NNNN Street X”. In fact, our deed and the plat designated this street as street “Y” (and our address as NNNN Street Y), but it was not until several weeks later that the “Y” sign was erected.

So the battle to forward our mail began. We began the laborious task of notifying providers online of our change of address; however, in many cases the new address was rejected as Not Valid. So off to the post office we go to find out why. PO supervisor promised to look into it…but the problem continued. Next trip to the PO we showed the deed and correct address – the supervisor assured us we were wrong and that the proper address was NNNN Street X. Off to the township property assessor’s office to get a copy of the plat. Back to the Post Office with the plat – found out that the supervisor was relying on the postal carrier to determine our “real” address, but eventually the correct street address was submitted to the US ADDRESS DATABASE.

Meanwhile our troubles continued. Many providers that had accepted the address update soon changed our address back to NNNN Street X after the PO advised them that this was our correct address. And others still claimed our new address was NOT VALID. Apparently, many organizations don’t regularly synchronize their private database with the USPS address database, so it was about a year before we could get all addresses updated. Fortunately (HA!) the postal carrier (usually) delivered BOTH addresses to our mailbox.

Now to my main point: what can be done to ensure our medical database (full of PII) is reasonably correct? I have already gotten “helpful” correspondence from our new insurance provider regarding my “conditions”, some of which I have never had! But can I prove it? Doubtful.

So I am considering a new strategy. I am going to methodically minimize my health history. Every provider requests personal and family health history. As the somewhat OCD person I am, I have in the past faithfully filled out and noted every condition that I and my immediate family have had. But I notice that almost all providers completely ignore this information and only focus on my current complaint. They may ask a few questions that in their mind are related. THEREFORE, I resolve to reduce to a minimum the information I provide in these detailed histories, and will probably only include surgeries and current complaints. Truly, my parents (deceased) only had high blood pressure! Why give fodder to the Watson AI?

What are your suggestions and strategies?
 
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JudiBlueHen

JudiBlueHen

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The "Watson AI" is the Artificial Intelligence + Database technology invented by IBM for health records and other massive AI applications. I fear this technology will be used to limit what we can/cannot do once we are identified with a "condition". It might even limit what "therapeutic measures" can be available to an individual based on personally-tailored analysis. Currently our medical professionals can use any authorized treatment based on diagnosis and insurance, but this could easily be further limited by our "conditions". We can do our best to avoid the medical system, but there are times when it cannot be avoided.
IBM Watson Health | AI Healthcare Solutions
 

PxD

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We see this same trend in the social media sphere, where Big Tech companies build profiles on individuals, and some people opt out of having any social media because they recognize that it’s a tool that’s used for gathering personal information. I would do the same with the digitization and sharing of medical records. They can’t profile you if you don’t participate. If you don’t participate, mistakes and/or packaging of your PII can’t happen.
 
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JudiBlueHen

JudiBlueHen

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We see this same trend in the social media sphere, where Big Tech companies build profiles on individuals, and some people opt out of having any social media because they recognize that it’s a tool that’s used for gathering personal information. I would do the same with the digitization and sharing of medical records. They can’t profile you if you don’t participate. If you don’t participate, mistakes and/or packaging of your PII can’t happen.
True, it is best not to participate!
But if you have an emergency or require labwork or a prescription, then you might be forced to interface with the medical system. I am curious how people want to protect themselves from the data thieves when they are forced to use the system for any reason.
 
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