Last year, Elizabeth Cox, MD, PhD, who leads the Program of Research on Outcomes for Kids (PROKids) received a three-year, $2 million award from the Patient-Centered Outcomes Research Institute (PCORI) to implement and evaluate a family-centered approach to improving outcomes for children with Type I diabetes.
A Tool to Help Families Manage Diabetes
The study will test the effectiveness of Problem Recognition in Illness Self-Management (PRISM), a ten-minute survey the PROKids team developed to identify the resources that best help individual families manage their child’s type 1 diabetes.
Specifically, the study will examine whether children whose families use PRISM to select resources to improve diabetes management will have better blood sugar control and improved child and parent quality of life.
“Children with Type 1 diabetes and their families face many challenges to controlling diabetes and maintaining good quality of life,” Dr. Cox explained. “Our preliminary work suggests taking good care of diabetes can be easier when healthcare providers offer resources tailored to each family’s specific needs.”
The award was one of 71 projects (from a total of 570 proposals) to be funded. PCORI evaluated the proposals based on scientific merit, how well they engage patients and other stakeholders, their methodological rigor and how well they fit within PCORI’s national research priorities.
Engaging Stakeholders in Research
The PROKids team also received support from the UW Institute for Clinical and Translational Research’s (ICTR) Community Engagement Core to create a stakeholder group comprising families, leaders from the Western Wisconsin Chapter of JDRF, and clinicians and staff from American Family Children’s Hospital, the Children’s Diabetes Center and the Children’s Hospital of Wisconsin’s Pediatric Diabetes Center.
This type of stakeholder involvement results in research that is more useful for patients, families and healthcare organizations.
Serving on PCORI’s National Advisory Panel
In addition, Dr. Cox was recently re-appointed by PCORI to serve on its 21-member Advisory Panel on Improving Healthcare Systems. This panel is one of four that provide expertise and feedback on scientific and technical issues, represent patient and stakeholder engagement, and review and highlight research questions to represent PCORI’s mission.
She joined the panel last year to work toward prioritizing potential research topics that could advance into future funding opportunities.
PCORI is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, caregivers and clinicians with evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.