Computation to Aid the Vulnerable
By Anna Lynn Spitzer
Irvine, Ca, August 23rd, 2013-- Gillian Hayes is determined to create sustainable change – improvements in technology and society that exist after specific research projects are completed.
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The associate professor of informatics works at the intersection of education, computer science, health and technology, developing applications for vulnerable and often underserved populations. Hayes, who also serves as technology director at UCI’s new Center for Autism Research and Treatment, shared her approach to research as well as several ongoing projects with a Calit2 audience during this week’s SURF-IT lunchtime seminar series.
“The change you’ve made should exist long after the research team is gone,” she said.
Vulnerable populations are those facing a variety of disadvantages and/or disabilities. “They’re at higher risk for a lot of social, mental and physical ailments but they often have limited access to and experience with technology,” she explained. “We think technology can do a lot of good in terms of promoting health and wellness, and education but [the] group of people who most need it have the most trouble getting access.”
The proliferation of low-cost, more powerful mobile devices is creating opportunities, however, to reach these groups more readily.
Hayes focuses on four main research challenges:
• Improving record-keeping, access to information and comprehension. “How do we get people to document what’s going on with their lives and more importantly, understand the records and be able to act on them?”
• Supporting a lifetime of data. Data is collected over the span of many years and often outlives those collecting it. “We have to think about data in these temporal spans,” Hayes said.
• Easing the chore of record-keeping. “It’s a very burdensome thing to keep track of physical ailments [per a doctor’s request], especially for someone with a disability, three jobs, two kids and a bunch of other things they’re trying to deal with.”
• Balancing concerns – including privacy, reputation and more – around data management. “Particularly in vulnerable populations, this is a group of people who usually don’t have much of a voice in terms of design and policy,” Hayes said. “How do we balance the concerns of those people?”
Introducing new technology to the world is much more complicated than just building and releasing innovative products, Hayes told her audience of SURF-IT Fellows. It’s essential to involve the stakeholders – teachers, clinicians, therapists, speech pathologists – by engaging them in the project and respecting their values and goals. “We have to design something they actually want.”
She digressed for a few minutes to share underlying theories about scholarship with the young researchers, including “action research,” an approach she uses, which develops interventions, tests them and continues to make refinements. She credited Kurt Lewin, who coined the term, with the simplest definition: “The best way to understand something is to try to change it.”
“It’s not just that we do surveys or we collect empirical data or we talk to people – although those are things we also do – but the action itself is a way we develop scientific knowledge,” she explained.
In the final analysis, local context and local solutions are essential. “Making people happy and making technology work in the environment you’re in is the most important thing you’re going to do. And that gets back to really respecting what our community partners are doing,” she said, adding that she always refers to collaborators as “partners, not as subjects or participants.”
Hayes shared prototypes of ongoing projects, including her team’s Mobile Social Compass (MoSoCo), which is being developed in conjunction with educators in the field of autism. The Android-based app uses visual cues to help children with autism practice social skills like eye contact, respecting personal space, starting interactions, asking questions and ending conversations appropriately.
Research with the technology yielded positive results. The children who used the app engaged in many more interactions than they had previously and dramatically reduced their social missteps. “What was more interesting,” Hayes said, “was the strategies we started to see. The kids would try to join groups in ways they had not done previously and they started to understand how groups are created.”
The downside was that because some neuro-typical children were part of the test group using and benefiting from the app, the school wanted to make it available to all children. Unfortunately, however, the prototype isn’t ready for mass deployment. “It takes an army to get this to work right now,” Hayes said. “One of the big challenges in working with community partners is that [they] often want to have access to things that are not really ready to use.”
Estrellita, another prototype introduced by Hayes, is a mobile tool used to track pre-term babies. The Android app helps parents record infants’ weight, diaper output, mood and other stats; in return, it sends them messages based that input, as well as communication from their clinicians. At the same time, the clinicians have access to an information dashboard giving them up-to-the-minute data on their young patients.
That project spawned another healthcare app called WellConnect, the focus of SURF-IT student Sandy Pham’s summer research. The technology is aimed at 16-25-year-olds, who are at the highest risk for depression, suicide, alcoholism, drug abuse and other mental health ailments. Since 67 percent of this age group own smart phones, the app is being developed to encourage self-care – with appointment reminders, medication logs, mood self-monitoring tools, motivational messages and the chance to earn points that can be exchanged for merchandise.
Hayes underscored the importance of including all stakeholders in every phase of community-based research. Whether it’s determining research questions, designing solutions, evaluating data or documenting results, this model demands group perspective. “This is about coming up with a design that meets the needs of the people you’re working with, even if it’s not the coolest thing, or the thing you thought you’d really like to try. These approaches require long-term meaningful collaborative engagements with community partners.”
In closing, Hayes urged the SURF-IT students to remember that technology is not ever the final solution to a problem. “It provides you with lots of options, which is awesome, but it’s not a silver bullet,” she said. “You need to be mindful that you can often produce more challenges with it.”