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Rebecca Delaney Builds Patient Self-Advocacy One Game at a Time

Sophia Friesen and Andrea Gallegos

No regrets.
As a life goal, it’s considered admirable. As a research goal, it’s more surprising. Still, this is the outcome Rebecca Delaney, PhD, is working to achieve: a world where no patient regrets their medical decisions, knowing that they made their choices with the best information possible and in accordance with their own values and priorities.
A research assistant professor in population health sciences at the Spencer Fox Eccles School of Medicine at the University of Utah, Delaney was drawn to psychology by her natural curiosity about others: “I’ve always kind of been the person to ask 20 questions to learn more about people,” she says. So perhaps it’s not surprising that she centers her research on finding ways to ask people questions and listen to what they say.

Navigating the System

Delaney’s current work aims to reduce regret and anxiety for patients with congenital heart disease (CHD) by empowering them to advocate for their own care. Delaney focuses on helping adolescent CHD patients to build skills to navigate the medical system through the transition from pediatric to adult care. 
Building self-advocacy for people with congenital heart disease is especially important, Delaney says, because for most congenital heart defects there is no cure; patients will likely manage medical complications for the rest of their lives. And as the population of adult CHD survivors grows thanks to improvements in early-life care, the need to increase medical self-advocacy grows as well.
Delaney’s research team is currently designing what she calls a “serious video game” to help adolescents with congenital heart disease learn the skills they’ll need to transition to adult care. In accordance with her philosophy of asking questions and listening, she takes a patient-centered approach, working with CHD patients and their families to understand their needs and goals and what they would want to see in such a teaching tool. 

A woman with light skin and long dark hair smiles at the camera.
Rebecca Delaney, PhD.

Listening to Learn

Patients and families are active collaborators on her research team, and Delaney says this partnership can be especially helpful when dealing with research hurdles that call for a fresh perspective. “As researchers, we have these blind spots,” she says. “When I’m reaching setbacks with recruitment or people aren’t engaging with an intervention, family collaborators are the people I can lean on to say, ‘Hey, what’s going on here that I’m just not seeing?’ and ‘How can I better design this intervention to meet patient needs?’”
Patient advocacy is personal for Delaney, who experienced the challenges of being a patient advocate when a relative was diagnosed with a medical condition. But her goal extends far beyond herself. She hopes that the tools she’s developing can be expanded upon to improve patient agency across many contexts. “Making sure that patients are educated, informed, feel empowered, and feel like they can engage and help direct their care as needed is extremely important for everyone,” Delaney says.
As a mentor to the students in her lab, as in her research, Delaney centers her work on the people she’s trying to help. “My ultimate goal is to help them be in a career that’s meaningful to them,” she says. Rather than assuming which career path is the best choice for someone, she adds, “I’m there to be their coach and supporter and help them achieve whatever they’d like to achieve.”
Delaney aims to be an example for and a support to other women in science, including the undergraduates she mentors. “I hope to help them to be able to feel like they can conquer anything and overcome whatever hurdles they face,” she says. “I’ve had really strong female mentors. The more we can build one another up and advocate for women in science, medicine, policy, and the workplace overall… We’re powerhouses and we can do anything we set our minds to.”


Hear from more of the incredible women working in health sciences research at the U.

Rebecca Delaney speaks about her work.