National Research Agenda

Abstract and Background

Below is a video abstract by Dr Ryan Coller, who highlights the rationale behind the creation of the National Research Agenda, the process behind defining key priority research areas and a summary of the six suggested sub-topics for future research. 

Priority Areas & Research Topics

  • How can social determinants of health be routinely assessed in CYSHCN care, and which interventions most effectively integrate social determinants to improve child and family outcomes
  • What are effective strategies for using technology to reduce disparities?
  • How can family adaptability be measured and improved? 
  • How can the optimal level of home supports (including health health care) that a family needs to improve child/family outcomes be determined and achieved?
  • What are feasible / acceptable telemedicine interventions and what is their influence on child and family outcomes?
  • How does rurality uniquely affect CYSHCN, and what are effective interventions to support CYSHCN and families living in rural settings?
  • What are “key ingredients” of successful CYSHCN care models (care plans, crisis planning, behavioral health, social work, navigators, coaches, etc)? How can they be disseminated and implemented most efficiently?
  • How can interdisciplinary teams (including families) divide labor and co-management for CYSHCN most effectively?
  • What are the most effective integrated health system models and how can they be disseminated?
  • How can palliative care principles be integrated into routine CYSHCN care, and what is the impact?
  • How can the education and health systems better integrate to improve CYSHCN health outcomes?
  • What are the domains and metrics that should be used to assess CYSHCN systems of care (reflecting consensus across stakeholder groups)?
  • Which payment models and state CYSHCN organizational structures (e.g., increased managed care use, accountable care, bundled payments, attention to social determinants, etc) most effectively enhance quality of care and CYSHCN wellbeing
  • How is return on investment for CYSHCN care coordination best measured, and over what timeframe?
  • Which value outcomes are meaningful to patients/families, health care providers and payers?
  • What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (e.g., to new providers, new settings, new schools, etc)?
  • How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?

Please view the full paper, published with the Journal of the American Academy of Pediatrics