Data collection: home edition

Physicians have long bemoaned their lack of information from the 99.9 percent of time that patients spend outside of the clinic. Many of the lifestyle changes necessary to lead a healthy life can't be measured during a yearly checkup, and patient self-reporting on diet, exercise and other daily habits is often flawed.

But as a new wave of devices and smartphone apps popularize the idea of "the quantified self," UChicago Medicine physicians are finding inventive ways to use these new data streams to improve patient care.

When gastroenterologist David T. Rubin, MD'94, the Joseph B. Kirsner Professor of Medicine, noticed how many of his patients with inflammatory bowel disease (IBD) were wearing Fitbit fitness trackers, it sparked an idea. Could data collected passively on activity at home, at work and everywhere in between, help patients monitor their health and prevent flare-ups of the disease?

In an ongoing study, Rubin is testing the reliability of such data, using both Fitbit wristbands and a specially designed app that allows patients to easily assess sleep quality, pain and other measures each day. Once validated, these data could help study regional and environmental influences on IBD, and on an individual level, customize treatments. 

"The best way to personalize medicine in 2017, at least in my field, is to use the patient as their own control," Rubin said. "So by using monitors or biosensors to track what's going on with a patient's disease, you will also be able to adjust their therapy in a smart way to get them better, and to keep them better over the long term."

Another piece of home technology drives the research of the Thirty Million Words (TMW) Initiative, a child cognitive development effort led by Dana Suskind, MD, professor of surgery and pediatrics. A 1995 study found that some children hear 30 million fewer words than their peers by fourth grade, which correlated with decreased academic success. Suskind's team helps close that gap by sending families home with a word pedometer, a "Fitbit for talking" worn by a child, which counts the number of words spoken near the child for 16-hour periods.

Using a platform built by the Center for Research Informatics, TMW home visitors can generate a report on the number of words registered by the device, incorporating the data into their recommendations for parents.

"It's very inspiring and motivational for the families to see their numbers," Suskind said. "Many of us haven't actually thought about how much we talk and interact with our children. After you've gotten the feedback, you can gauge it better. The point is a mindfulness not only about how important your interaction is, but how much you're doing."

This is the fifth of a five-part series on data-driven medicine and research at the University of Chicago Medicine, originally published in the Spring 2017 issue of Medicine on the Midway.