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I Don’t Want To Be Digitized

I live in a bubble where everybody seems to be obsessed with Health Information Technology (HIT). The average man or woman you meet on any American street has no idea and no concern about the insurmountable difficulties associated with Electronic Health Records (EHR) and other HIT initiatives. I know because I asked random folks I encounter at the gas station, the dry cleaners, the supermarket, Starbucks, the grocery store and other mundane locations. It’s not a scientific survey, but it is disconcerting for me to realize that my days are consumed by something nobody cares about. I’d like to think that, although obscure, my endeavor could somehow better the condition of human kind, at least the portion of human kind that I can touch. To that end I come up with visions of a future where HIT enables millions of people to receive state of the art, truly personalized health care in thousands of small intimate locations filled with expertise and compassion, where everybody knows your name, and the computer knows your genome. Other folks in my bubble, probably for the same reason, are conjuring futuristic images of implantable sensors and long distance care delivered by artificial intelligence, with the occasional, and mostly preventable, acute episode addressed by robotic devices, supported by super computers in an operating room of the future.

Steve Jobs was an implementer. Gene Roddenberry was a visionary. There isn’t much technology out there today that was not envisioned by Mr. Roddenberry in his sci-fi odyssey through the infinite universe, and the most forward thinking idea tossed around now is Gene Roddenberry’s half century old notion of a tricorder, a hand held device that can evaluate health and diagnose disease in noninvasive ways. The Star Trek ethos presumes the existence of EHRs and HIT, just like it presumes the availability of all information ever recorded (Big Data?) in the all-powerful computer that speaks with Mrs. Roddenberry’s voice. We have a long way to go before the technology vision is fulfilled, but we have an even longer trek ahead of us before Earth becomes the hunger free, poverty free, greed free, egalitarian planetary bliss, where Mr. Roddenberry envisioned his technology to be operating for the common good.

The other day I was watching a recording of Dr. Eric Topol speaking to a group of Google engineers. The charismatic and super credentialed Dr. Topol has a new book out, and a vision of digitizing human beings in order to prevent and cure disease. Humanity has been engaged in a quest to prevent and cure disease since the dawn of civilization, and probably long before that. While the means to that end have steadily advanced from a patriarch blessing, to magic bracelets, secret potions and finally to chemicals and HIT, the goal remains the same: we don’t want to suffer and we don’t want to die, unless we choose to do so for a higher cause. While the word of God was usually identified as that higher cause, individual Liberty is the modern day call to arms, considered to be worth both suffering and death, but this too may change, because what is now mockingly referred to as “rugged individualism” is quickly giving way to consumers neatly aggregated in analytic hives of predictive similarity.

In the course of his Google presentation, Dr. Topol displayed a variety of cool technologies coming closer and closer to Gene Roddenberry’s tricorder, some that are already available to use and others still lurking in research labs. My fellow residents of the HIT bubble have probably heard of most of these iPhone enabled little miracles allowing one to turn his mobile phone into an ambulatory Intensive Care Unit to constantly monitor vital signs, activity, sleep patterns, items ingested and items excreted. Still in the making are widgets that can monitor your brain waves, your thoughts and other implantables capable of predicting disease before it actually manifests. A broad new horizon is opening up for Ari, an old friend of mine, who is a diagnosed hypochondriac, and until now was costing the socialized health care system in his country tens of thousands of dollars every year for EKGs alone, sometimes in the ER, and most of the time in an endless string of cardiology appointments.

In order for these things to be useful to more folks than just my old friend, they must be somehow tethered to a central command center, where the data is continuously analyzed and either the malfunctioning unit is warned of impending disaster, or better yet, actions are triggered to address the malfunction and restore the unit to normal operating parameters, based on individualized genomic data, other environmental and historical factors, and similar data points from millions of other humans. Obviously, engaging in such complex research and analytics requires that all monitoring data of all people is aggregated and considered by as many intellects as possible, which would be all of us in a sweeping wave of democratization of science placing the infallible wisdom of the collective above the fallible wisdom of any one individual. This is above and beyond Roddenberry’s wildest dreams. Or is it?

I’m afraid (truly afraid) that the glory must once again go to Gene Roddenberry and his crew. Although it took them a bit longer than the tricorder, they composed a detailed picture of a future where humanoids are outfitted with monitoring devices from birth and where crowdsourcing is the prevailing mechanism for collective governance and operations. They named those fictional people The Borg.

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