Blueprint for a National Prevention Infrastructure for Mental, Emotional, and Behavioral Disorders (2025) / Chapter Skim
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4 Data and Data Systems to Support the Infrastructure
4 Data and Data Systems to Support the Infrastructure
Pages 113-152
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From page 113... ...
The prevention infrastructure needs both surveillance and monitoring data systems that are regularly updated to determine not only the prevalence and incidence of mental, emotional, and behavioral (MEB) disorders but also any changes in trends (e.g., new and emerging substances, new routes of administration, change in demographics of those affected)
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From page 114... ...
They also need to be available by subgroup, particularly those that continue to be marginalized and experience persistent MEB health disparities. As with other aspects of the infrastructure, data to meet these needs may be incomplete or not easily accessible to communities, including due to funding constraints.
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From page 115... ...
can inform developers of the intervention, funders, and other communities considering the approach. A strong data system -- as a key characteristic of a learning prevention infrastructure -- is also important to feeding back into the evidence base about an intervention's effectiveness or lack thereof in preventing MEB disorders.
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From page 116... ...
. For example, TABLE 4-1 Examples of Sources and Types of Administrative Data Relevant to MEB Health Sector Relevant Variables Education Grade promotion, attendance, suspensions, expulsions, test scores Health Care and Pharmacy Well visits, diagnoses of psychiatric disorder, hospitalizations, emergency room visits, treatment for psychiatric and substance use disorders Criminal Legal Arrests, reason for arrest, incarceration Medical Examiner Deaths and causes of death Emergency Services, such as 988 Calls, chats, texts that are routed, answered in-state, or abandoned; speed of answer average contact time NOTE: MEB = mental, emotional, and behavioral.
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From page 117... ...
EHRs EHRs are distinct from administrative claims data in that they include a richer source of quantitative and qualitative documentation of health care encounters. Primary care clinicians could more frequently collect measures of MEB health, such as the Personal Health Questionnaire, and enter them into the EHR.
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From page 118... ...
Periodic investments by Substance Abuse and Mental Health Services Administration (SAMHSA) could also facilitate survey updates that incorporate new knowledge about risk and protective factors, changes in focal outcomes, and other realities in an ever-evolving prevention and health promotion landscape.
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. Qualitative data Qualitative data include observations (e.g., to record behaviors, using standardized methods)
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Casey Foundation Kids Count Data Book 2024 and children, etc.) For • School system administrative data • Early Development Instrument elementary • Survey data • National Survey of Children's Health Longitudinal Cohort school ages • EHR • Medicaid Claims Data • Youth Risk Behavior Surveillance System (YRBSS)
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From page 121... ...
, clinical sector data • Administrative data • Data from educational settings (e.g., American College Health Association's Emotional Well Being Survey) • Other sources of data for higher education settings, such as the Healthy Campus Inventory and parts of the National College Health Assessmente Working- • Surveys • BRFSS, NSDUH, National Health and Nutrition Examination Survey, National Health age adults • Clinical sector data Interview Survey Older • Surveys • National Health and Aging Trends Study (NHATS)
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From page 122... ...
For example, the SAMHSA Behavioral Health Barometer, last published in 2020, provides key data from the 2019 National Survey on Drug Use and Health (NSDUH) and National Survey of Substance Abuse Treatment Services.
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Public health surveillance relies on clinical care settings, ranging from primary care to hospital emergency departments, reporting infectious diseases to public health agencies. In recent years, other means of passive surveillance have emerged, including wastewater testing.
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The need for coordination and data integration across different government agencies, including tribal governments, and systems has been highlighted by National Academies and other reports. One National Academies report recommended that federal agencies collaborate with state and local counterparts and private-sector partners in philanthropy and business to "develop an integrated plan for longitudinal data collection and coordination and analysis of federal surveys, administrative data, and vital statistics that provides a comprehensive approach to measuring and tracking child and adolescent MEB health" (NASEM, 2019a, p.
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From page 125... ...
. Between 2020 and 2021, the Robert Wood Johnson Foundation convened a National Commission to Transform Public Health Data Systems, which identified key challenges to the data infrastructure: limited funding, lack of federal–state coordination, and systemic hurdles (RWJF, 2021)
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From page 126... ...
. Better national coordination on prevention, such as the mechanisms recommended in the Governance and Partnerships chapter, could involve bringing together representatives from relevant agencies that play a role in preventing MEB disorders to extend or adapt interoperability standards to their data to enable integration that can better inform cross-sector work and meet the shared aims of improving MEB health.
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From page 127... ...
The University of Delaware prepares the annual State of Delaware Epidemiological Profile for substance use, MH, and related issues for the State Epidemiological Outcomes Workgroup, which promotes "the use of behavioral health data for prevention, strategic planning, decision-making, and evaluation." (University of Delaware, 2024)
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. Health Systems Data Integration Partnership In Minnesota, the state's 11 largest health systems collaborate in its Electronic Health Record Consortium, which was launched in March 2020 to address gaps in traditional public health surveillance and support public health response to COVID-19.
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. Also, health care systems along with public health agencies can advocate for evidence-supported public policy changes that can improve MEB health and well-being.
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From page 130... ...
is necessary but not sufficient for communities to track their progress. The prevention infrastructure in communities unfolds in a variety of settings, two of which are multisector community coalitions and primary care settings, beginning with community health centers and federally qualified health centers.
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Coalition Check-Up is another resource for coalitions. BOX 4-2 Using Qualitative Data to Inform Selection of Preventive Strategies A study in rural Georgia in a community where coalition development was in the early stages highlights the work of assessing "the feasibility and accessibility of implementing different rural suicide prevention efforts" (Roth et al., 2023 p.
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From page 132... ...
The CDC Foundation has developed five equity principles for using public health data in partnership with the communities from which the data come: recognizing and defining systemic factors, paying attention to equity in language and action, making space for cultural modifications, developing a shared data agreement, and facilitating community governance of "the collection, ownership, dissemination and application of their own data." (CDC, 2024)
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From page 133... ...
7 The report found that a "broad range of assessment frameworks and data and measure ment tools have been developed to assess equity, but equity assessment remains a nascent and evolving science and practice" and made four recommendations on this topic: Recommendation 5: The Office of Management and Budget (OMB) should require the Cen sus Bureau to facilitate and support the design of sampling frames, methods, measurement, collection, and dissemination of equitable data resources on minimum OMB categories -- in cluding for American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino/a, and Native Hawaiian or Pacific Islander populations -- across federal statistical agencies.
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. Other public health and social or community change models exist that can inform and guide community-partnered MEB health promotion.
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DATA ISSUES (CHALLENGES AND OPPORTUNITIES) Some key issues related to data and measures in the prevention infrastructure for MEB health and well-being include the following: 1.
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agencies or states and the federal government. The guidelines provided by the National Academies report Toward a 21st Century National Data Infrastructure include the following: "Data sharing is incentivized when all data holders enjoy tangible benefits valuable to their missions, and when societal benefits are proportionate to possible costs and risks" (NASEM, 2023a, p.
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From page 137... ...
The ability to adapt the YRBSS to meet local needs is another reason the complete withdrawal of a state is deeply concerning." Need for small area data One gap in the data infrastructure needed to inform MEB disorder prevention efforts is a federal community resource. HHS has had several efforts to create such a data repository, including the Community Health Status Indicators (CHSI)
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. They added that the importance of PLACES "for local health assessment and intervention efforts may be the platform and its functionality on which needed community data elements could be loaded" (Phillips et al., 2021, p.
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RECOMMENDATION 4-2: The Substance Abuse and Mental Health Services Administration, Centers for Disease Control and Prevention, and other federal agencies that provide resources for community-based prevention of behavioral disorders should include specific support for data infrastructure in all relevant grant programs, including funding for acquiring relevant data, data integrity and privacy, new data collection, data sharing, collaboration with relevant public- and private-sector partners, and obtaining training and technical assistance as needed. Measuring Well-Being HHS has made well-being a central concept in its Healthy People 2030 initiative's vision and adopted Overall Health and Well-Being Measures (OHMs)
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From page 140... ...
A measure of population well-being would also provide a more expansive way to track and demonstrate progress, complementing specific national measures, such as for deaths of overdose and suicide, and framing a positive high-level target for the prevention infrastructure. Such measures can be used to periodically ascertain, track, and report on population well-being and integrated into Healthy People and related state and tribal population health reports.
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From page 141... ...
Relevant partners may include the HHS Office of the National Coordinator of Health Information Technology and national public health organizations, such as the Association of State and Territorial Health Officials and the National Indian Health Board. The HHS Strategic Plan, to which ONC, SAMHSA, CDC, and NIH are contributors, includes Objective 4.4: "Improve data collection, use, and evaluation, to increase evidence-based knowledge that leads to better health outcomes, reduced health disparities, and improved social wellbeing, equity, and economic resilience" (HHS, 2024)
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From page 142... ...
data from counties.10 Technical Assistance for Communities Although the prevention infrastructure is fragmented, robust resources are available to provide training and technical assistance to coalitions and organizations endeavoring to use data and indicators to inform their planning, implementation, and evaluation. Technical assistance is characterized by a focus on improving capacity of organizations or systems, and on targeted and tailored supports by subject matter experts (Scott et al., 2022)
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. Using Community Evaluation and Outcomes Data to Inform Planning The work of implementing EBPs to promote MEB health and well-being is cyclical (see Figure 4-2)
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The learnings and findings that result from implementation of EBPs outside of research settings need to be shared widely and make their way into the practice-based knowledge that informs other communities and could be used to spread and scale programs. Data Systems Require Funding The cost for a community data system will vary depending on community size, available in-kind resources (such as free data infrastructure support)
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. Another model is the community data infrastructure, as found in the work of the National Neighborhood Indicators Project.
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2024. State-level infrastructure to support prevention, presented to the Committee on Blueprint for a National Prevention Infrastructure for Behavioral Health Disorders, Meeting 3.
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and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) to student health records.
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2024. State-level infrastructure to support prevention, presented to the Committee on Blueprint for a National Prevention Infrastructure for Behavioral Health Disorders, Meeting 3.
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2023a. Toward a 21st century national data infrastructure: Mobilizing information for the common good.
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n.d. Integrated population health data project.
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Publication No. PEP23-06 07-002 Rockville, MD: Center for Substance Abuse Treatment.
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