From Strangers in a Foreign Land to Active, Engaged Citizens

* Abbreviation: CSHCN —: children with special health care needsDespite many successes in patient- and family-centered care, including efforts to address cultural competency, much work remains to be done to fully understand and implement effective strategies for patient engagement. The Affordable Care Act and some state legislation have mandated programs and provided incentives that promote engagement and partnerships with patients and caregivers because patient activation and engagement have been shown to improve the quality of care and lower health care costs.1 There are 3 key participants in the use, experience, and costs of health services: the provider, the payer, and the consumer. According to the tenets of health care reform, for quality to improve consumers must be empowered to make informed decisions.2 Therefore, continuing progress and establishing a practice of engagement in patient care across the nation is critical to the survival of health care reform in the United States. One way to look at this engagement is to examine individual relationships between health care teams and patients and families. In pediatrics, an informative paradigm is in the care of children with special health care needs (CSHCN), with whom the highest degree of interaction occurs.This article was jointly written by a parent of CSHCN and a primary care physician to offer a perspective on the evolution of family partnerships as parents and other caregivers gain experience working with the health care system. While pediatric health care systems transform to become more family centered, parents are often … Address correspondence to Christopher J. Stille, MD, MPH, Section of General Academic Pediatrics, University of Colorado School of Medicine/Children’s Hospital Colorado, 13123 East 16th Ave B032, Aurora, CO 80045. E-mail: christopher.stille{at}childrenscolorado.org