Partnering with Parents and Patients to Augment Research Endeavors, Scientific Discovery and Experience and Quality of Care
The concept of Co-production is a hallmark of a Learning Health System as it drives improvements in partnership with involved stake holders. ImproveCareNow™ (ICN) is a learning health network that has demonstrated remarkable improvements in outcomes in children with inflammatory bowel disease (IBD), with remission rates increasing from 57% to 82% since its inception in 2007. While its focus remains on improving quality of care of children with IBD, the infra-structure and culture developed within the network has allowed establishment of research focus as well with clinical studies addressing pressing questions on comparative effectiveness and dietary therapy for IBD. This presentation will give an overview of the Learning Health System model of research, and provide real-world examples of how patients and families have been engaged within Learning Health System research.
Gain insight into a Learning Health System model of research including its rationale and core principles
Understand how patients and families can be incorporated into Learning Health System research enterprise
Learn and discuss how patients and families involvement can be incorporated into Learning Health System operations