Protecting, Sharing, and Hiding Behind Private Health Data

New Orleans      Most of us think our own health is our business, that is until we find out it is big business, and that everyone wants to make it their business.  Health data is now a quiet corporate battlefield and a public issue at the same time because of the pandemic.  Who knows who – or what – will win, but it is unlikely that we will come out of it well, given the bad odds and the big players?

Google, Microsoft, Apple, Amazon, the whole lot of them want to get into the health data game.  In Google’s case it may be because their search engine is already the first doctor that many of us seek out for the slightest malady.  There’s a fight to acquire Fitbit, the popular device that monitors calories, heart beats, and exercise.  Apple watches don’t exactly do that, but, as they say, “there’s an app for that.”

Hospitals are required, since the passage of the Affordable Care Act, to show progress in moving fully to digitize all patient medical records.  The big tech companies see a gazillion dollar opportunity there, and there’s nothing inherent in most of our experiences with hospitals that should make any of us feel comfortable with their data policies and protection.

Our legal rights and protection are under the care of the Health Insurance Portability and Accountability Act or HIPAA, as it is known, passed in 1996.  The problem, underlined recently in a report in the Wall Street Journal, is that the law has become outdated over the last 25 years given the tech explosion.  “Doctors, hospital, pharmacies, and health insurers are bound by its requirements.  But technology companies offering health-related services via sensors, apps and online portals may not be.”  Believe me, if there’s a pinprick of an opening in the law, the tech disrupters will drive a truck through it, and over us.

While most of us are thinking we’re protecting our good genes, bad germs, and everything we know about them and keeping it to ourselves, we may be voluntarily putting our stuff on the auction block digitally.  On the other hand, during our current Covid-19 public health crisis and the struggle to achieve contract-tracing to stall the epidemic, authorities want and need more information about us, making the strong argument that we should shed some privacy for the sake of the common good.  Google and the gang have offered apps in a number of countries to allow people to self-trace, so to speak, through our cellphone’s GPS.  They swear that they won’t share or sell, and maybe they are telling the truth.  Let’s hope so.  Like I said at the beginning, we’re caught twixt and between.  We want to do right by our community, but we also don’t want our privacy for sale.

Our union recently handled a case in an independent living community home where we argued that co-workers had the right to know that a consumer had tested positive for the coronavirus.  The company tried for a while to claim that they had no responsibility to inform the workforce or the other clients in the home because of HIPAA.  Of course, they were hiding behind their irresponsibility, but even having the gall to wave the HIPAA flag, seems yet another argument that it is time to tighten it up and bring our protections up to date.

We’re on the short end of this stick given all the players, but, if there is one thing the tech companies and healthcare industry have taught us, it is to get ahead of their truck or they will run us over.  Right now, we’re just roadkill.

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