In the laundry list of things you can do with a few swipes or taps of your finger – create a grocery list, conduct banking transactions, and track your daily workout – researchers at the Perelman School of Medicine are partnering with software developers to help create mobile apps aimed at conducting larger, more accurate research studies, faster.
From recruitment to data analysis, research studies of all kinds take immense amounts of time. Among the challenges, one of the biggest comes right at the beginning: identifying and enrolling participants. In trying to recruit patients for a breast cancer research study, Kathryn Schmitz, PhD, professor of Epidemiology, says her team sent out over 60,000 letters to recruit participants, and of those, only 305 women enrolled in the study.
“We’ve all seen those flyers people use when they are trying to sell furniture, or looking for a new roommate; the ones with the pull off tabs with a phone number to call if you’re interested. That’s what we’ve been using to recruit research participants for decades,” said Schmitz. “In today’s world where we have technology in the palm of our hand that lets us watch live TV, set DVRs, and control home security systems from anywhere in the world, it’s crazy that we’re still using paper flyers to conduct what is basically a series of simple surveys and questionnaires.”
Working with a team of doctors and software engineers across the country, Schmitz recently helped develop the Share the Journey mobile app, a tool that will explore a new approach to monitoring the health of women living with breast cancer and survivors by asking participants to answer questions about themselves, their medical history, and current health. The goal of the study is to understand the symptoms after breast cancer treatment, why these symptoms vary over time, and what can be done to improve them. But for Schmitz, the picture is much bigger than one study.
“It’s not about a specific app, or what we have chosen to track in a particular app,” she recently said in
an interview with CNBC. “It’s about the platform, and the fact that researchers will be able to collaborate to be able to build whatever they want to track in patients. That’s what’s really exciting.”
However, alongside the sense of excitement around the possibilities and implications, some question the ethical considerations and reliability of data provided by participants in a non-controlled environment. Additionally, the fact that subjects need to have a smartphone in order to participate may present a socioeconomic limitation. Considering many low-income population groups that may not have access to smartphones are also at an increased risk for certain diseases and chronic conditions, there is a question of accurate representation in the data collected. Still, experts believe the development of app-based research techniques is a big step in the right direction.
“Penn Medicine faculty have been developing an app to screen for post-partum depression and suicide risk in low-income women, who, it turns out, often have smartphones, and our data suggests that this population’s use is reflective of the general population,” C. William Hanson, MD, chief medical information officer at Penn, said. Penn faculty have also been part of the development of an iPhone specific app for patients (and their family/caregivers) to use following a psychiatric emergency room or inpatient stay. This app, he says, “provides a convenient place for patients and their families to record and retrieve information on clinical follow up, safety plans, and local resources.”
Regarding the potential exclusion of at-risk population groups or participants who don’t have a specific device – where an app may be available only for iPhone users, for example – Hanson says most researchers are very attentive to the demographics of their patient populations.
“Researchers are incented to find ways to equitably or appropriately address class and race in the design of their research. In other words, they don’t just ‘look where the light is,’” he said, adding that well done studies that permit patients to use smartphones as data entry and/or data collection vehicles have “the potential to broaden the scope and reach of research considerably.”
There’s no denying that more research is needed on the efficacy and accuracy of using mobile apps to collect data, but for now, most experts see the ongoing development of these software frameworks as a much-needed and long-awaited big break in the way research is conducted.