Jaylene has struggled with her hearing since she was very young. Her mom, Caroline, puts it plainly: “We couldn't even tell you how many ear surgeries she’s had. We don't even know.” Managing complex hearing needs requiring specialized care can be especially challenging for those in rural Alaskan communities like Jaylene and Caroline’s. But when Jaylene and her family had access to telehealth services for her hearing, there was a noticeable change in the process. “It was happening faster,” she says. Caroline agrees: “Way faster.”
The PCORI-funded Hearing Norton Sound Study was designed to answer a critical question: How can children in remote communities get connected to timely, effective hearing care? This patient-centered comparative clinical effectiveness study, a randomized controlled trial, compared two referral approaches. The first model was the standard referral process: Kids would be sent home with a letter to their parents, asking them to go to a local clinic for more testing. In the new, coordinated model, schools and local clinics worked together to help ensure referrals led to telehealth visits with hearing specialists.
Telehealth Improved Access to Hearing Care for Kids
The study’s results were consistent with Jaylene’s experience. A co-principal investigator (PI) on the study, Susan D. Emmett, M.D., MPH, puts it simply: “Children who had access to telehealth were more than twice as likely to receive follow-up care after school screening, and that care happened over 17 times faster.”
This kind of research is possible because of PCORI’s focus on patient-centered approaches and community engagement within the studies it funds. Samantha Kleindienst Robler, Au.D., Ph.D., the study’s other co-PI, explains, “You need time at the beginning to build that partnership with the community and time at the end to disseminate the research. And PCORI funds that.”
Community partners helped shape every step of the Hearing Norton Sound Study, from the research questions to how care models were implemented. Researchers worked with community health aides, elders, parents, teachers, school staff and others to help ensure a thorough understanding of the community: what would work well, and how things could be adjusted when needed. For example, the community helped the researchers understand the importance of eventually offering the telehealth model to every child who participated in the study. “This isn’t something that a single researcher or a single team could ever solve,” Samantha continues. “It’s about everybody coming together and thinking about it from different angles.”
Tangible Differences, Huge Potential
As Susan shares, the study’s results “have huge implications for how we provide hearing care to children in rural areas, but also for how we provide care to children generally.” Telehealth can be adapted for other remote regions and for other conditions that require specialty care. Samantha agrees. “It’s exciting that it’s becoming a reality, and we’re able to move the science as quickly as we are. And PCORI has been the catalyst for that.”
For families like Jaylene’s, the difference is tangible every day. Before telehealth, a trip to Nome, Alaska for hearing care meant an hour-long plane ride. “It’s nice not to have to do that anymore,” Caroline said. Jaylene, now a young woman, recalls what a burden the travel could be while she was in school. “There would be times where I would be behind in school. Telehealth made it so I didn’t have to miss as much.” And her mom didn’t have to miss as much work, either. The study didn’t just produce data; it produced real improvements for kids and families. “Telehealth really made it easier for us to get the care,” Caroline says. And they got that care faster.
Posted: May 20, 2026