Academic research can be a solitary pursuit, cloistered in clinics and labs physically—and intellectually—distant from patients.
But what if the patients themselves worked the science? Helped test the equipment and trouble-shoot the computer interface? What if they “broke” things and helped with the “fix”?
That’s the methodology behind new “patient-powered” research pairing faculty from four colleges at the University of Utah—Nursing, the School of Medicine, Engineering and Mines and Earth Sciences—with Utah families whose kids have asthma. Using a $5.5 million grant from the National Institutes of Health, University scientists will collaborate with families to develop a biomedical informatics platform that will make it possible to crowdsource and link air quality data with personal health monitoring—and, eventually, pinpoint the cause of a child’s wheezing.
“Pediatric asthma is complicated and we don’t fully understand how to control it,” says co-principal investigator Julio Facelli, Ph.D., professor of biomedical informatics and an associate director at the Utah Center for Clinical and Translational Science (CCTS). “Our system will allow researchers worldwide to get answers to questions that they didn’t even know they could ask.”
The health affects of air pollution are well documented. Smog has been linked to increased asthma attacks, heart attacks, strokes, hospitalizations and premature death. But despite all the data produced through regional air monitoring by the U.S. Environmental Protection Agency (EPA), there are large gaps. Few of us know how much pollution, or which types, we’re exposed to on a daily basis. Localized pollution spikes near busy highways, industrial centers and factories don’t necessarily register on these networks.
In recent years, the EPA has started encouraging average citizens to do their own monitoring using “small sensor” technology, hand-held devices that are affordable, easy to use and often sold as part of crowdsourced “air mapping” projects. An Air Sensor Toolbox, which explains how to choose and calibrate air monitors, can be found on the agency’s website.
But there remain a lot of unknowns about the quality and full potential of these “next generation” sensors, which is what the first phase of the University’s multi-year project will help explore. Stage 1 will involve putting individual environmental sensors in the hands of a few dozen kids and their parents. More than “citizen science” or “DIY discovery,” the project aims to involve patients in the design and construction of the infrastructure that makes that kind of research possible.
“We see parents and kids and researchers as a really core group of our team,” says Kathy Sward, co-principal investigator on the grant and an associate professor of biomedical informatics research at the College of Nursing. “We want people who are really willing to think about this from a process standpoint, people who are willing to play with the ‘toys’ and beat the daylights out of this software. You want it in the hands of people who are going to do every crazy thing they can imagine with it…and push every button.”
The grant, a component of the Pediatric Research using Integrated Sensor Monitoring Systems (or PRISMS) program from the NIH’s National Institute of Biomedical Imaging and Bioengineering, will run for four years. Over that time, the team and a core group of families will test a growing variety of personal environmental monitors—some wearable, some home-based— and create Web-based interfaces that could form the foundation of future pediatric asthma research.
The Internet-based “infrastructure” the Utah teams create will enable kids, parents, doctors and researchers to feed real-time information into a comprehensive database. “It’s not the information itself that’s the point of it,” Sward says. “It’s how the information flows and it is organized.”
The first year, researchers will focus on finding families willing to try out a series of sensors and begin developing computer systems to process and integrate the new streams of data. The second and third years will be spent refining the computer infrastructure—sensor connections and a website design—and developing other modes for inputting the data, including age-appropriate mobile apps. In the final year, the researchers plan to run a pilot research project with Utah families.
When the virtual pipeline is complete, a seventh-grader carrying an air quality sensor in his backpack and his doctor could consider whether the aerosol cleaner the school janitor was spraying at class break might have sent the student to the emergency room a few hours later.
“Whatever happens indoors is going to contribute quite a bit to your exposure,” says Neal Patwari, Ph.D., associate professor of electrical and computer engineering who is designing wireless sensor networks for the project. “The devices will monitor what’s going on right around you and send the information so researchers can eventually analyze it. They also may give you immediate feedback so you can take action to limit your exposure.”
The eventual database will incorporate information from doctors’ records, hospital emergency room visits, wearable Fitbit-like sensors, and regional air quality monitors, like those installed on UTA TRAX trains. The idea is to measure as many clinically relevant environmental exposures as possible to store and standardize the data so that any scientist can investigate how each contributes on its own, and together with others, to pediatric asthma.
The Utah team will work in tandem with another group of researchers creating similar systems in another state. The NIH anticipates using the new networks as the basis for a national data coordinating center for pediatric asthma which could eventually be made available online to the public.
The project, Sward says, will make the difference between researchers and pediatricians attempting to extrapolate from large-scale, imprecise data, when they really need personalized patient information. It’s one more example of how the University of Utah is participating in the national precision medicine initiative. “All of the sudden, you’ll have this massive amount of data that wasn’t available to researchers before,” she says. “We will be able to see in near-real time what’s happening to people.”
Rebecca Walsh is a Senior Writer for University of Utah Health Sciences.