Partnering With Parents Of Children With Medical Complexity: A Framework For Engaging Families For Practice Improvement

The role of patients and families has evolved over the years,from being viewed as entities who were told what to do, to consumers of health services, to being central to health system design and clinical decision-making.When designing health care practices and programs to be patient- and family-centered, we believe that parents of children with medical complexity (CMC) bring valuable viewpoints and experiences to the table. Good health and functional outcomes for CMC and their families are dependent on active family engagement with their health care partners. We apply the Patient Engagement in Redesigning Care Toolkit (PERCT) model to describe the experience of complex care programs with engaging families at various levels of program design and function, including strengths and pitfalls experienced with each PERCT category. Operationalizing the health care system to treat patients and families as equal stakeholders is necessary if we want to succeed in a patient-centered, value-based environment.