Sometimes without warning, one of the autistic students in a classroom at the Center for Discovery will lose control. He will scream and cry. Throw things. Bang his head against the wall.
The six adolescent boys in this Monticello, N.Y., classroom, some of the hardest-to-handle students in New York State, cannot explain what is upsetting them. Unable to talk, they seem to live in their own world.
Matthew Goodwin, an assistant professor at Northeastern University, is trying to better understand their world by carefully tracking the boys’ movements and their environment. He has the boys wear sensors on their ankles and wrists that measure arousal levels, while cameras mounted on the walls record activities in the classroom, with the goal of finding what triggers episodes in the boys.
This is one of the early projects in a new program at Northeastern University to develop personal health informatics: devices and apps to improve health.
“The goal is really to be observing what happens from a patient’s point of view,” said Stephen Intille, one of the program’s founding faculty members. “Where can we insert technology to make their experience better?”
The five core faculty members, including Goodwin and Intille, believe that technology can help people take greater control of their health while improving the delivery of care. The only way that’s possible, they argue, is if technology is designed with users in mind and is proved to be effective with rigorous research.
Successful technology, Intille said, needs to be easy to use, easy to interpret, and embedded in the environment, like Goodwin’s sensors. Just telling people how far they have run or how many calories are in their dinner will not be enough to change behavior.
“Most people aren’t motivated by data,” Intille said.
Many of the current projects at the Northeastern Personal Health Informatics program are aimed at giving individuals — particularly people with limited resources — more opportunities to take charge of their health.
Assistant professor Andrea Grimes Parker is launching a social media program that will allow residents in Roxbury who participate in a once-a-week gym program to share their exercise tips. She believes those tips will be more useful to participants because they are “locally grounded,” coming from people in the same community.
She tried a similar program in Atlanta and found “that small feedback loop — that ‘what I’m sharing has value’ — was very encouraging and empowering to the users.”
For example, some participants wear sensors to measure their activity levels and earn small rewards for getting extra exercise, she said.
Intille and colleague Timothy Bickmore are collaborating on a project to embed patient-focused technology in hospital rooms that would allow patients to track their pain, for example, answer basic questions for them, and remind them of their doctors’ names and specialties.
Bickmore envisions a “bedside presence with a range of sensors that can tell what’s going on in the room and what’s going on with the patient.”
In another project, a Northeastern student is developing technology to identify when a patient with a neurological disorder such as ALS subtly starts losing tongue control. This can cause swallowing problems and lead to pneumonia and hospitalization, so catching it early can be beneficial to both patients and the health care system.
“There is a huge cost-savings potential,” and it has obvious benefits for the patient, said Rupal Patel. She is an associate professor in the Department of Speech-Language Pathology & Audiology and another founding member of the personal health informatics program.
The innovation came from a student who did not know anything about neurological problems, Patel said, but who saw a problem he could solve with his expertise in computer science.
That is another unusual hallmark of the Northeastern program: It matches a wide range of specialists, such as computer scientists, language pathologists, behavioral experts, and game designers, for example, with people who understand health challenges.
“All of these perspectives working collectively in this space — that’s how we’re going to have potential to have a substantive impact on public health,” said Lisa A. Marsch, director of the Center for Technology and Behavioral Health at Dartmouth College, who is not involved with the Northeastern program.
Goodwin said he could never have designed his project for autistic students without such collaborations.
Theresa Hamlin, associate executive director at the Center for Discovery, said that until now, nothing has worked to keep these students calm enough to be able to participate in typical classrooms, or even to live with their families.
“The entire system has tried everything there is,” she said. “You name it; they’ve tried it.”
Goodwin said that tracking the students and their environment will allow their teachers and caregivers to see the world as they do and better understand what triggers their tantrums.
“Something is driving [their] changes,” Goodwin said. “Demands in the classroom? Shifting stress? Seizures? Gastrointestinal problems? We don’t know.”
Part of what Goodwin and other faculty members will teach Northeastern students is how to design studies like this to make sure their technology is effective. It doesn’t matter how cool a technology is, he said, if it doesn’t provide health benefits to the user.
Correction: Because of an editing error, an earlier version of this article misidentified the gender of Rupal Patel, an associate professor in the Department of SpeechLanguage Pathology & Audiology at Northeastern University. Patel is female.