Data Surveillance for Children’s Mental Health

Creating pathways for supporting the work of data stewards to coordinate, collaborate, and improve methods for understanding children’s mental health data.

About Our Work with Data Surveillance for Children’s Mental Health

The U.S. has no comprehensive surveillance system for mental, emotional, and behavioral disorders among children, even though these disorders have a high prevalence and cost throughout the life course. Potential benefits of a comprehensive surveillance system are that it would aid in the reporting, tracking and assessment of screening, diagnosis, and early intervention for mental, emotional, and behavioral disorders. By detecting risk and delays early, interventions and treatments can be implemented when they are most effective. Likewise, comprehensive surveillance and early detection would allow for improved reporting for scientific, policy and resource allocation purposes.

NNPHI’s in-house Evaluation Team is leading a multiple efforts with the US Centers for Disease Control and Prevention (CDC) to create a blueprint for a possible mechanism to help states track whether children with mental disorders are receiving recommended services, and to document prevalence and trends of these disorders to inform resource allocation. To achieve this goal, we are collaborating with subject matter experts to:

  • Develop reports on data governance activities and methods, rationale for children’s mental health surveillance, and evaluation of state readiness for surveillance
  • Investigate the feasibility of small area estimate models for children’s mental health outcomes

Our Work

Part of an ongoing series of publications on this topic, a report outlining the importance of data governance and guidance on how to establish data governance structures is available here in our Resource Directory. Upcoming publications will include one publication on the evaluation of the current surveillance efforts states are undertaking and another publication on the long-term goals for children’s mental health surveillance. Together with the data governance report, this work will culminate in a toolkit for stakeholders to use and adapt to their needs.

One phase of work is intended to design a “roadmap” for how to build capacity in public health departments and agencies to implement a sustainable approach to systematic surveillance of children’s mental health. The NNPHI team worked with the CDC team to design a “roadmap” for how to more accurately surveil mental and developmental disorders among children, with an eye for designing a system that can be adopted by state or local agencies. There were five phases of work:

 

  1. integration of team vision and priorities through an in-person team kick-off;
  2. exploration of the current literature and understanding of the field;
  3. expert panel convenings to tap a wealth of experts in a very targeted and exploratory way;
  4. engagement of subject matter experts and analytic team engagement;
  5. and integration of findings into a roadmap.

Another phase of this project will build capacity to systematically collect, analyze, interpret, and share data to inform decision-making about children’s mental health, to be accomplished via two aims: (1) determining the feasibility and methods by which data from national surveys could be made publicly available by smaller geographic units than state and national levels; and (2) assessing state capacity and interest in building a system for monitoring the mental health and well-being at the population level and supporting early identification of children with or at risk for mental disorders to connect families with effective treatment. The large sample sizes and sampling approach of national surveys allow for estimates that are representative at the national level allow for inspection of temporal trends and provide the opportunity to make comparisons to other health indicators among children with and without mental disorders. However, due to the need to protect the identity of respondents, the smallest geographical unit available in the public use datasets is typically the state level. Larger and more diverse states are thus left with prevalence estimates that obscure variability in geographically linked indicators of health. In addition, although ensuring participant privacy may help ensure validity and completeness of responding, an opportunity to identify and connect children with or at risk for mental disorders and connect them to effective treatment is missed by deidentified reporting. Thus, additional efforts are needed in states wanting to maximize the potential value of child mental health surveillance while continuing to protect child and families’ identifiable information.

Our Impact

Our evaluation will build evidence for the utility of a coordinated data surveillance effort to capture information on screening, diagnosis, intervention/treatment, and outcomes. Success in this area could help ensure that all children at risk for poor outcomes associated with mental, emotional, and/or behavioral disorders are identified early and receive appropriate treatment, which will promote optimal outcomes in childhood, adolescence, and adulthood.

Contact Us

For more information, please contact us at evaluation@nnphi.fcg-staging.dev.


This project is funded by U.S. Centers for Disease Control (CDC) and Prevention Office for State, Tribal, Local and Territorial Support FOA OT13‐1302.

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