Data-driven
Mary Khetani, assistant professor of occupational therapy, is developing apps for the parents and families of children receiving early intervention services, to give them a more direct role in reporting progress and setting goals for their child’s treatment.
The larger goal is to transform what is now a paper-based, face-to- face, provider-driven process of assessment and evaluation into a system that offers electronic options to gather and use data from providers and families.
“The idea is to improve how we systemize the information we collect from individual families to improve their child’s care, and use that information collectively to build knowledge around the trajectories and participation outcomes of children across a variety of conditions and diagnoses—how they experience rehabilitation, and how their experience of rehabilitation relates to outcomes that matter to families over time,” said Khetani, director of the Children’s Participation in Environment Research Laboratory (CPERL) in the Department of Occupational Therapy.
Early intervention offers therapies and support services to children age three and under who have developmental delays or disabilities, and their families.
“We know from the literature and from clinical experience that having families as part of the early intervention process, at every step, influences the child’s outcome in learning and community participation,” said Ashley Stoffel, clinical associate professor of occupational therapy, who collaborates with Khetani on research related to family engagement in early intervention.
Accessibility laws require that parents and families must be equal partners in the multidisciplinary care team, Stoffel explained.
But that’s not as easy as it sounds; Khetani knows this firsthand. She began her career as a pediatric occupational therapist at an early intervention program, where she interviewed parents, then wrote pages and pages of notes. But the information gathered by this time-consuming process was not systematically integrated into decisions about care, or used to look for trends in goals and outcomes for families served by the program.
“The assessment tools we primarily relied on were designed for professionals, who are with the child for maybe an hour a week,” said Khetani. “But the parent is with the child most. The parent’s voice is so important to the care process, but we didn’t have feasible ways to systematically capture that perspective to plan and monitor care.”
Her “clinical irritation with the way functional outcomes were being documented” propelled Khetani to a Sc.D. in rehabilitation sciences at Boston University, a postdoctoral fellowship at Slone Epidemiology Center, an academic career at Colorado State University and finally to UIC.
With continuous funding since 2012 from the National Institutes of Health and organizations such as the American Occupational Therapy Foundation, CPERL is partnering with parents and providers to develop apps that parents can use to record their child’s participation in activities at home and in the community. In her research, she works with collaborators in various disciplines at institutions including the Colorado School of Public Health, McGill University, McMaster University, University of Texas Medical Branch and Jonkoping University in Sweden.
Khetani has been working with colleagues to develop and use an app called the Participation and Environment Measure (PEM).