Parent Partners: Improving the pediatric medical home of children with genetic disorders though parent-to-parent navigation and non-medical support

The mission of the Mountain States Genetics Regional Collaborative (MSGRC) is to ensure access to exemplary genetic and newborn screening services in the eight states of the region (Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah, Wyoming).  MSGRC identifies and disseminates evidence-informed practices and policies by (1) initiating and evaluating innovative demonstration projects; and (2) collaborating to improve access to appropriate genetics expertise in the context of a medical home. We report on an innovative demonstration project, Parent Partners, which aims to improve the medical home of children with genetic disorders though parent-to-parent navigation and non-medical support. We describe the Parent Partner model, and report the evaluation findings related to implementation and impact. Currently, twelve Parent Partners are supporting families in seven pediatric practices in Montana and Wyoming.  Parent Partners interact with families in the practice, share their first-hand experiences of caring for a child with a genetic disorder, assist with healthcare navigation, and provide information on non-medical components of the medical home.  The unique perspectives and rigorous training of the Parent Partners empower them to be effective partners with both the families and healthcare providers. We conducted process and outcome evaluation studies to assess ways in which Parent Partners enhance the practices. We report the results associated with key outcomes: Parent Partner readiness and satisfaction, provider satisfaction, level of integration of Parent Partners into the practice, and impact on the family’s ability to locate and access the services needed for their children with genetic disorders and special healthcare needs.