V for Vendetta or Value?

My Fitness Pal tracks your every morsel. Your FitBit/Smartphone tracks your every step. The Omron watch tracks your blood pressure. MySugr tracks and helps manage your diabetes. The Proteus ingestible sensor tracks your gut from bite to shite. Roche’s Coagucheck lets you track your PT/INR. Finally, to treat the condition with the highest fatality rate, there’s an app called ‘Amazing Girlfriend Manager’. As goes the dictum, “There’s an app for that!”

Before Big Data and IOT became the abused words that it is today, Doug Laney in 2001 highlighted the three ‘V’s’ of data – volume, velocity, and variety. As the quantum of information expanded so did the number of V’s. There is no doubt about the evolution of clinical medicine since the genesis of the data deluge, both in the hands of the user and in the hospital and labs, but despite the obvious benefits, it is important to be cognisant of its current imperfections too!

Volume: IBM claimed that 90% of all the data in the world today has been created in the past couple of year. They estimated that 2.5 exabytes or 2.5 billion gigabytes (GB) of data was generated every single day. This they said in 2012. That was before one could flirt with Alexa, before FitBit and Apple Watch recorded your every move (literally and figuratively) and when Electronic Health Records and data protection were just beginning to become a topic of global deliberation!

Volatility: Ivan Illich amusingly, yet rightly, said that “The medical establishment has become a major threat to health.” Guidelines change so often based on new data that it is impossible to keep abreast with them, let alone integrate them in to one’s practice and hospital protocols. As data collection grows exponentially your new guidelines on statin usage would probably be revised every 30 seconds.

Variability: The volume of data is problematic as it is but the true value of Big Data is in comparisons between data sets. The inter-human and intra-human variations aside, data collection is not standardized thus making the comparison even more complex.

Verity: Trust is not something that comes easily to Homo Sapiens despite the fact that we are the pinnacle of the evolutionary pyramid on earth thanks to our ability to come together. Most doctors rarely trust another doctors diagnosis and almost every patient seeks a second or more opinions. How then are we to trust the data gathered by other providers or healthcare professionals across the world, let alone the computer crunching it or the AI chatbot communicating it?

Validity: Children are the apple of our eye so the pediatric intensive care unit (PICU) must be the core of healthcare (pun intended). Yet in a setting where vitals are monitored real time, a study by Lawless et al suggested that 94% of all alarms in a PICU were clinically irrelevant and Tsien et al found that 92% of alarms were false alarms in their observation in the same clinical setting. “Alarm Fatigue Syndrome is the clinical version of “Boy who cried wolf”!

Vulnerability: I won’t get in to the whole storage and hacking perspective. I’ll let the Aadhar fiasco be a reminder of that.

Virtue VS Vilification: Since The Human Genome Project, our understanding of genetics changed dramatically. The slightly less spoken of regulation in the western world is one I’d like to touch upon. The Genetic Information Nondiscrimination Act forbade insurers and employers from basing one’s insurance premiums on genetic predispositions. In the age where start ups, like 23 and Me, can map your genome for a menial sum compared to a decade ago, imagine being charged ridiculous insurance premiums for you and your family because you have genes that increase your “susceptibility” to Crohns Disease or hypertension. Or worse still, being rejected by an employer/hospital or granted medical school admission on the basis of “worse genes.” It sounds eerily like a modern age ethnic cleansing of the erstwhile Nazis.

Value:  This, in essence, is the Holy Grail. Real world evidence and AI based clinical trials are all the rage in 2018 and no doubt it has added value in every sense. However, the ability to make sense of all that data is as important as hoarding it, yet the arduous move toward ‘Value Based Healthcare’ still seems an eternity away.

Big data is truly similar to the dystopian thriller, V for Vendetta. The jury is out on how it will evolve but one thing is for sure hate it or love it, as V famously said in the movie, “There is no certainty, only opportunity!”

Rohan D’Souza: About the Author

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