Gillette Children’s is among the first pediatric hospitals in the U.S. to establish a formalized Family Engagement in Research (FER) Program – an approach to research used for decades in other countries but still emerging in the U.S. A new paper in the journal Pediatrics describes how Gillette Children’s built its program, offering practical guidance for other hospitals considering a similar model.
Developed in Canada by McMaster University’s CanChild Centre for Childhood Disability Research, FER involves collaboration between patients, families, clinicians and researchers as partners throughout the research process. Before 2023, at Gillette Children’s – a specialty health system for children with rare diseases, disabilities and complex illnesses based in St. Paul, Minn. the research department had doctorate-trained scientists and clinician investigators who designed and co-led studies, but there were no research team collaborators with lived experience, including patients, families or caregivers.
In 2023, the organization created the “blueprint team” to develop the infrastructure and framework for a FER program.
“If we don’t involve lived experience partners in a research process, we’re only approaching a problem from a one-dimensional perspective, that of the researcher,” says Rhonda Cady, Ph.D., lead author and research program director. “At Gillette, we also pull in the clinician’s perspective, which is very important but again, that’s two dimensional. We really need that third dimension, which only lived experience partners can bring to the table.”
Today, Gillette Children’s has a FER registry of 84 lived experience partners, including 42 individuals actively involved in over 20 research projects. Six partners are authors or co-investigators.
As part of the blueprint team’s work, it created guidelines for the program and a job description for a FER coordinator, who was required to have lived experience and whose role is to assess, onboard and guide the lived experience partners in their work. “Family engagement in research is all about making sure the parent or patient voice has a seat at the table,” says Haley Brunelle, co-author and Gillette Children’s FER coordinator. “It’s about meaningful co-creation of research design.”
An important stipulation of the program is paying lived experience partners for their work. “This boldly stated we were peers with the Gillette employees, and fully valued,” says Adenike Chon, co-author and lived experience partner as the parent of a teen with medical complexities.
Co-author Kari Pederson is a lived experience partner as an adult living with cerebral palsy. In her work as a clinical social worker, parents of children with complex care needs often tell her they want to be heard but rarely are asked for input into research. “In the past, researchers have guessed at what’s important to the people with this condition,” she says. “But if you don’t have that condition or you don’t parent someone with the condition, you don’t know where the pain points are.”
Other authors are Elizabeth Boyer, Ph.D., Megan Gallagher and Tricia Brisbine.
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