Big Data and the Patient in Front of Us
In recent weeks I’ve come across some articles in the “lay press” about Big Data that contained a couple of eminently quotable statements about BIG DATA.
First, let me present a brief patient vignette:
This physician in his 60’s was taking low dose aspirin because that, the data showed, would decrease his heart attack risk. He was in compliance with current recommendations, at least one of them.
After several nosebleeds, this physician stopped the aspirin. He was now out of compliance but free from his inconvenient apparent complication of treatment.
During the past year, the ASPREE study showed that aspirin would only benefit our hero if he had heart disease, which he doesn’t appear to have. He is now in compliance, doing what the Big Data is suggesting he ought to do.
Now, the two newspaper quotes that started me down this road of thinking:
1) “Data that doesn’t yield insight is just trivia.”
2) “Stories move data from the head to the heart.”
DATA WITH OR WITHOUT INSIGHT
An article in The Wall Street Journal describes how employers mine data from their employees activities, on their computers (sites visited, emails answered and so on), in their vehicles (speed, routes etc.) and on the phone (with whom, length of call etc.), but as one UPS representative pointed out, all that data isn’t worth anything if it doesn’t help you understand what’s going on:
“UPS confirmed it uses advanced analytics to sift through data in ways that help it better serve customers and drive efficiency. “Data that doesn’t yield insight is just trivia,” a spokesman says.”
https://www.wsj.com/articles/three-hours-of-work-a-day-youre-not-fooling-anyone-11563528611
STORIES MAKE DATA MEANINGFUL
The New York Times ran an article about “mystery shoppers” in healthcare facilities and how their work, which includes personal observations gathered while posing as patients and subsequent interviews with real patients in hospitals and clinics can make sense of otherwise confusing data:
Hospital leaders pore over reams of data. They review financial spreadsheets, patient satisfaction surveys and clinical outcome data. Secret shopper studies don’t replace that information. Rather, they attempt to give the data context.
“Stories move data from the head to the heart,” said Kristin Baird, president and chief executive of the Baird Group, a Wisconsin-based company that performs secret shopper and other consulting services for health care organizations. She has seen how patient stories that exemplify otherwise confusing trends in the data can influence health care executives powerfully.”
This reading made me curious. As a simple country doctor, I wanted to know what we really understand about Data in Medicine.
THE 6 V’S OF BIG DATA: Volume, Velocity, Variety, Veracity, Variability and Value
I found a 2018 article by Ristevski and Chen in the Journal of Integrative Bioinformatics that nicely illustrates the many facets of what people lump together as Big Data.
Seeing the succinct summary of the meaning of these six V-words immediately helped me feel I have a better grasp and comfort level thinking about how to approach the data that is constantly bombarding me as a physician.
“The volume of health and medical data is expected to raise intensely in the years ahead, usually measured in terabytes, petabytes even yottabytes. Volume refers to the amount of data, while velocity refers to data in motion as well as and to the speed and frequency of data creation, processing and analysis. Complexity and heterogeneity of multiple datasets, which can be structured, semi-structured and unstructured, refer to the variety. Veracity referrers to the data quality, relevance, uncertainty, reliability and predictive value, while variability regards about consistency of the data over time. The value of the big data refers to their coherent analysis, which should be valuable to the patients and clinicians.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6340124/
I will repeat and italicize the last sentence in this article:
“The value of the big data refers to their coherent analysis, which should be valuable to the patients and clinicians.”
So, how do we know how to apply all this Big Data, how do we make it relevant for the patient in front of us?
Harvard T.H. Chan School of Public Health posted this piece by Lisa D. Ellis on their website, describing a program called Measurement, Design, and Analysis Methods for Health Outcomes Research.
“Since diabetes patients act and respond differently to treatment due to many reasons, health care providers often cannot advise patients as to how they might respond given their personal characteristics simply because they do not have the required information,” Simonson points out.
The reason this crucial information is lacking is that “typically, no one clinical study can separate out the results by all the patient characteristics that might affect treatment,” Testa offers. “In addition, clinical drug trials do not typically measure how patients feel or how satisfied they are with their assigned treatment,” she says, adding, “In most clinical trials, the ‘true voice’ of the patient is usually silent.” To better capture this important component, Testa, Simonson, and their colleagues are pooling existing databases of diabetes patients with information gathered online and through social media.
https://www.hsph.harvard.edu/ecpe/value-of-health-outcomes-research/
Here, again, I will repeat and italicize the most salient sentence of my search result:
“In most clinical trials, the ‘true voice’ of the patient is usually silent.”
Not to get too heavily Jungian, but referring back to my recent writings about the Grail Legend and “Whom does the Grail Serve”, the obvious question here is “Whom does the Big Data serve?”
Primary care providers are perhaps the Parsifals of medical mythology.
“Central to the legend is that a simple man, a fool, needs to ask the simple question “whom does the Grail serve” in order for the wounded Fisher King to be healed. But Parsifal, who is such a person, heeded his mother’s advise “don’t ask too many questions” and missed his opportunity.”
https://acountrydoctorwrites.blog/2019/07/08/the-stages-of-a-mans-life/
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