Illumina

 

Dave Racer

 

We are witnessing the transformation of Big Data to “Smart” Data. Will this benefit you or bind you down?  Are you comfortable with data analytics that can peruse your unique medical indicators and predict what ailments await you in the future? Would you agree to abide by medical managers prescribing – or requiring – you to live a certain way to reduce your chance of chronic illness or early death? What would you do if today’s mail included advertisements promoting a cancer treatment center near you, even though your doctor has never mentioned the “C word” to you?…

 

Illumina, an informatics company that provides genomic sequencing services, is a cog in the information industry’s effort to build an Integrated Medical Record (IMR) for each person.  Illumina points toward the day when its genomic sequencing of an individual’s DNA will be combined with other data sources to improve individual patient care – Illumina calls this effort the Precision Medicine Initiative (PMI).  Eventually, this is meant to lead to an Integrated Medical Record (IMR) for every individual.

 
A patient’s IMR is a giant step beyond the Electronic Health Record (EHR). The EHR currently attempts to parrot back to a computer all that the healthcare system has done to or for an individual patient. Illumina sees the day when the EHR can be combined with genomic data, research findings, public programs, lifestyle and consumer apps, databases containing variants, and phenotypic data. Individuals will have data sensors injected into their bodies, wear other devices, and using WiFi or combined with smartphone apps, provide computers with immediate bio-metric feedback that can signal medical providers when something is wrong – or right.
As Big Data gives way to the Integrated Medical Record using smart data, all can be mixed together in a stew that includes third party medical payers and government regulators. With this, Illumina see that true patient-centered care will result. Never mind the layers of medical managers watching over the patient’s consumption of medical care services.  IMR-informed medical care, managers believe, could be delivered by any one of many “providers” – Physician Assistants, Nurse Practitioners, Pharmacists, Medical Clerks, computer printouts – maybe even medical doctors. IMRs, its proponents believe, will open the door to reducing “cost” and improving “efficiency,” as long as patients cooperate and fit the norms established by the computer programmers who create the smart databases.

 
With a well-crunched IMR at hand, a medical “provider” could guide a patient toward better health, and help a person avoid certain chronic or catastrophic conditions before they happen, so it is thought. Predictive medicine is the goal – to keep each person well as long as possible and at the lowest possible price.  Big, Smart Data, however, serves many masters, and has many applications.  Target stores sell consumer goods and is constantly trying to identify new customers and turn them into lifetime shoppers. In 2012, Ross Duhigg reported in the New York Times how Target enraged the father of a 16-year old girl. Target’s analytics had identified his unmarried daughter’s pregnancy before the father had a clue about it. A series of Target advisements for diapers, baby wipes, and other infant-related consumables triggered the father’s ire. Target used the incident to improve on its ability to find others going through life events, and market to them without tipping them off about how much they already could predict.

 
IDI is a data-fusion company. Its primary Big Data product delivers comprehensive digital portfolios on individuals to its clients, many of whom are private investigators. “…[It]… combines public records with purchasing, demographic, and behavioral data. [The company has] already built a profile on every American adult, including young people who wouldn’t be swept up in conventional databases…” And sounding very much like Target, “We have data on that 21-year-old who’s living at home with mom and dad,” so says Mr. Dubner.

 
Data is power. Smart data makes Big Data usable. How smart data is used and by whom is yet unknown. Central to all this smart data as it touches medical care, however, is the need for patients to cooperate. Smart data promoters may grossly underestimate each individual’s stubborn refusal to follow the rules.   Consider, however, the power of smart data in the hands of pharmaceutical companies. Politicians have learned how to use smart data to drill down into households and separate voters by preference. Retailers have learned how to identify individuals most personal traits to lure them into the store. Private investigators can purchase your individual portfolio. The medical industry intends to so thoroughly crunch your personal data that someday, a phone center clerk will be able to call and remind you to take your medicine, the one that Big Pharma has specifically designed for you based on your personal medical information – the one the politicians agreed they would allow you to consume.

 
There are many unanswered questions about smart data and an individual’s IMR. Central to all these questions is whether individuals will be free to use the smart data as they see fit, or if the managed medical system will tell them what they must do or not do. If your point of view is that liberty matters, you will want to pay attention to this trend of sending everything to a computer, and hoping what you get back enhances your life.

 

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