“Where is the life we have lost in living? Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?” T.S. Elliot’s prescient observations came to mind recently. I had just read four articles that had appeared in the Wall Street Journal in as many days. Though separate from each other, from my perspective they formed a continuous narrative.
The first, entitled “Doctors Dig for More Data About Patients”  advocates the urgent need for doctors to aid medical researchers by collecting more data on their patients. The idea is that data mining, mathematical formulas, evaluations of demographic groups and advanced data analyses will help develop better preventive measures in health care. An idea, at this point, that is unproven and more wishful thinking than fact.
Historically doctors have been tasked with treating patients. They accomplish that by gathering what information they need from patients, specific tests and examinations. Ever since the widespread incorporation of electronic medical records into the daily lives of doctors, they are forced by computerized medical records input programs to collect data that are not relevant to their task at hand.
Precious minutes, even hours of the doctor’s scarce time are spent by him or her working as a data entry clerk to tabulate this extraneous information. Since the doctor doesn’t want it, what is this information used for? It is used by medical researchers, government, policy wonks, social planners and other non-medical people for “research.” Some is sold to commercial interests. What it does not do is directly help the patient with his immediate problem.
Now, according to the article, there are not enough data. Doctors are asked to up their collection efforts. More is needed to increase the value of the work of the data scientists and their analytics. The push is not for doctoring the date but for data-ing the doctors. Data miners are also looking to amalgamate the usual medical information with consumer, purchasing and personal financial information bought from commercial data mining companies. Governmental data on housing, employment, poverty and other areas will be added to the mix as well.
Very little is said about personal choice or privacy in the midst of all the fanfare about the presumed benefits of medical data mining. The only nod to any sort of privacy issues was when one researcher lamented that it was “hard to get the non-medical data.” Well, I certainly would hope so! Do we really want our personal and private medical file to be merged with our personal and private financial data and our personal lifestyle, hobbies and purchasing patterns? Do we want the resulting profile to be used by anonymous and unaccountable researchers for some unsubstantiated idea about preventive medicine? That is often the code for saving insurance companies, government and hospital corporations money. Even if the ends were laudable, it is still a sobering thought about how little we can count on privacy and how little jurisdiction we have over our own information and lives.
There is an even more pressing question – is it really possible to achieve a more effective, humane and patient-oriented system of medical care by first dehumanizing people by turning them into lots of numbers, data points, categories and demographic groups? How can we get to individualized care by becoming more institutionalized first? Something about a sow’s ear and a silk purse comes to mind.
Before anyone gets too enamored with electronic medical records and data mining, I should mention two of the other articles in the set. The second is “Medical Records Mix-Ups is a Common Problem, Study Finds.”  The conclusion is that medical errors, always a problem, have increased dramatically as the practice of medicine has become more complex and automated. Errors include wrong entries into medical records, misidentifying patients and applying medical information to the wrong patient. It is possible to catch some of these errors when the patient is being treated, but once the data leave the medical environment and go to researchers, mistakes get sunk into the system beyond retrieval. Bad data equals defective results.
The third article further emphasizes the potential for errors, “Sick Children Face Potentially Deadly Danger: Medication Errors.”  Though focusing mostly on the problem of medication errors inside the hospital and at home, the clash between individualized versus automated care is evident. As one nurse practitioner observed, “In a health-care environment where technology is talked about so much, sometimes it really is about going back to the bedside and sitting with the family and doing education on basic concepts.” Yes, sometimes there is no option but to talk directly to patients!
That leads into the final article, “Turn Off the Computer and Listen to the Patient.”  As was mentioned earlier, there is a great and growing dissatisfaction among both doctors and their patients about doctors’ preoccupation with data entry rather than the patient. Medical records that once were used solely for the patient’s benefit are now “primarily management tools for billing complaisance and population-data collection.” The patient is almost nowhere to be found.
Data collection is king because it is the gateway to getting paid. Now the data are serving another master, namely the researchers who want more and more of it to fuel their algorithms and analytics, and consequently, their paychecks. This is in direct competition with the patient for the doctor’s time and attention. What the patient really needs is the doctor’s undivided attention. The most important phrase is “undivided attention.” When the doctor’s attention is split between the patient and data collection, it is not undivided. The result is an automated, institutionalized sterile system. “Today our health-care system is losing its humanity amid increasingly automated and computer-driven interactions between doctors and patients.” 
Do not get me wrong – I am not a modern Luddite. Research is important in the advancement of medicine. However, medicine is both an art and a science. “Computer algorithms don’t result in higher quality of care because the practice of medicine is a subtle art.”  It simply cannot be done from behind a computer. What is being proposed and pursued by all this automation and data mining is certainly not an art but it is not good science either. After all, it is often said that if you torture a set of data long enough it will confess to anything.
We have come full circle. Doctors are being forced into automation and computerized data collection, to the detriment of the doctor-patient interaction and medical outcomes. They are being tasked to act as data collectors for the policy wonks and researchers who want more data and the institutionalization in medicine. The practice of medicine is not only more complex but less individualized and personal. This has lead to more dangerous errors, for adults and children. The heart-felt plea from both doctors and patients is to unplug the computers, forget the extraneous data gathering and get back to what medicine is supposed to be about – doctors treating patients one on one.
With all due regard to T.S. Elliot and his far-seeing questions, I propose a shorter version applicable to today’s medical world. “Where is the life we have lost in information?” That life may well be our own.
 Melanie Evans, Doctors Dig for More Data About Patients; Wall Street Journal, Sept. 25, 2016
 Melinda Beck, Medical Records Mix-Ups is a Common Problem, Study Finds; Wall Street Journal, Sept. 25, 2016
 Hannah Furfaro, Sick Children Face Potentially Deadly Danger: Medication Errors; Wall Street Journal, Sept. 25, 2016
 Caleb Gardner and John Levinson, Turn Off the Computer and Listen to the Patient, Wall Street Journal, Sept. 21, 2016
©2016 Linda Johnston, MD