By Hannah Bernstein
As the need to access clear, factual information about COVID-19 becomes increasingly pressing in the United States, third-year personal health informatics Ph.D. student Yixuan (Janice) Zhang is ready to apply her research to the cause.
Zhang and her team, led by Assistant Professor Andrea Grimes Parker, hope to apply their research in crisis informatics to the current situation with COVID-19, providing methodology and clarity to understand how information is distributed from source to citizen.
The original study that spurred the team’s new research focus is set to be published in April at CHI 2020, a premier Human-Computer Interaction conference sponsored by the influential Association for Computing Machinery (ACM). The study focused on the 2018 Merrimack Valley gas explosions, which displaced more than 30,000 people across multiple towns in northern Massachusetts. Zhang said they focused on older adults because they are often more vulnerable in crisis situations due to health concerns and lack of technology access.
“For the younger generation, they get information more quickly from social media,” Zhang says. “But for older adults, it’s not that they don’t want to use those technologies … they may not know there are existing platforms there to help them.”
Overall, a big takeaway Zhang found in the data was how information flowed. Was it top-down, meaning citizens were receiving the information from governmental bodies or agencies? Or was it bottom-up, meaning information was coming from neighbors or others on social media? The answer came down to trust.
“They trust people they know well,” Zhang says, explaining that many older adults during the gas explosions received information from a local senior center. “It’s not just about whether or not they trust the information itself. It’s more about the information sources — who distributed this kind of information.”
Image: Janice Zhang
The research team also found that older adults were very interested in learning how technology could help them during emergencies, but didn’t know where to start. They weren’t always aware of functions such as emergency contacts, medical information, and emergency SOS buttons that are standard in both iPhone and Android devices. And, some didn’t know “crisis apps” existed at all — these are apps specifically designed to provide emergency information, such as FEMA or Smart911.
In the case of the Merrimack explosions, many people had to rapidly leave their homes and find housing at one of the emergency shelters. Some forgot medications or health supplements, and they made risky decisions to go back into dangerous areas to retrieve them. Zhang said a common thread linking Merrimack to COVID-19 was a loss of personal dignity and autonomy. That has been especially true in China and Italy, where people are under tight quarantines, unable to go outside and interact with friends or neighbors. Improving access to and knowledge of technology could ensure people retain their dignity and autonomy in future emergencies.
In her team’s new research focus on COVID-19, Zhang explains that the key word is “rapid” — they want to start collecting data right now. While crisis informatics research can be done afterward, as they did with the Merrimack Valley case, there is information that can only be gathered while an emergency is going on. It’s called experience sampling, and it involves collecting real-time behavioral and situational data about people’s lives.
“People can do follow-up or post-crisis interviews and surveys to collect data,” Zhang says. “But you have no way to gather situational factors in people’s lives that are happening now.”
Zhang says the Merrimack Valley study also highlighted the importance of community. If people in that Massachusetts region relied heavily on their local senior center for information, maybe a similar type of information distribution could help provide information on COVID-19 to vulnerable populations in the United States right now.
“It’s important to reach out to the local community to make people aware of these tools and how they can use them to make decisions or get a sense of control during crises,” Zhang insists.