Children with medical complexity (CMC) have been identified as a subset of children with special health care needs (CYSHCN) who have serious, chronic, and multiple medical and mental, behavioral, or developmental health conditions, including functional limitations, high health service needs, and high utilization. 

Compounding these health complexities, families with CMC may face additional social complexity factors such as poverty, housing instability, food insecurity/insufficiency, lack of transportation, language barriers, literacy, or foster system involvement. This can make it challenging for families of CMC to navigate systems of care, which impacts health equity.  

Health equity is the fair and just opportunity for all people to attain their highest level of health and well-being regardless of race, ethnicity, legal status, socioeconomic status, age, disability, gender, age, or sexuality. As the fifth aim in the “Quintuple Aim,” health equity is seen as a key element necessary to achieving a health system characterized by improved care, outcomes, and costs. Moreover, it is argued that health system transformation should be driven by a health equity first approach. 

Monitoring inequalities in health risks, care, and outcomes allows for the identification of health topics that must be prioritized to bring about improvements in multiple health domains and also of population subgroups that are disadvantaged at the intersections of multiple identities. While recognition of the significance of a data-driven, health equity-first approach is growing, there is a commensurate need among health systems to increase their capacity to conduct health equity assessments and use the findings for decision-making. 

To date, there is no standardized approach for assessing health equity among CMC among patients and families. The unique needs experienced by this population can make it challenging to empirically identify priorities and track progress toward improving health equity. It is thus essential that the health equity assessment process, from start to finish, be participatory by involving caregivers, youth, families, providers, and community-based organizations as key collaborators. Incorporation of their perspectives ensures design and delivery of an assessment that can meaningfully inform quality improvement that addresses health inequities among CMC. 

This toolkit aims to offer insights and guidance along the journey toward assessing and improving health equity at the level of CMC and their families in service delivery settings. The following roadmap outlines key steps for assessing equity at the patient or client level. Click on each step below for guidance and resources related to each part of this process. 

  • Step 1— Readiness: Assess current health equity work and gauge internal readiness. 
  • Step 2— Partnership Approach: Establish a partnership approach with key collaborators including caregivers, families, and providers.  
  • Step 3—Domain Identification: Identify priority domains of equity in collaboration with key partners. 
  • Step 4—Methodology: Determine the data collection methodology. 
  • Step 5—Assessment Design: Select or create an assessment instrument. 
  • Step 6—Implementation: Implement assessment and collect data. 
  • Step 7—Analysis: Analyze and interpret findings. 
  • Step 8—Transition to Quality Improvement: Use data to inform quality improvement efforts. 

Note that content is being released on a rolling basis. The roadmap and suite of resources will be updated in an ongoing fashion as information becomes available.