FHSD executed several contracts in FY 2022/FY2023 to secure services for data collection, analysis, and developing publications/dashboards to ensure data is available for public use.
CSHN Ongoing Needs Assessment: The CSHN Branch is collaborating with the University of Hawaii Center on Disability Studies (CDS) to conduct ongoing needs assessment of children with special healthcare needs (CSHCN) in Hawaii. This effort includes a high-level overview of the Hawaii CYSHCN population, informed by data sources such as the National Survey on Children’s Health (NSCH). In February 2021, findings from the 2018-2019 NSCH dataset were presented at the Pacific Rim International Conference on Disability and Diversity. Data from 2019-2020 is being reviewed.
Primary data collection will be through a widely distributed survey of youth aged 12-22 with special healthcare needs and focus groups with youth and parents. The assessment is designed to:
- collect better demographic & health data for this population in Hawaii by race/ethnic groups
- assess COVID impacts on physical and emotional health
- assess youth access to healthcare services, and
- collect information to help teens transition to adult healthcare (a CSHN priority area).
Questions for the survey were adapted from the National Survey on Children’s Health (NSCH). The survey is being translated into Tagalog, Ilokano, and Hawaiian to collect better data from underrepresented groups. Since Pacific Islander communities are so diverse in language and culture, focus groups or other methods will be used to access this community.
The survey was disseminated widely through outreach from community programs for youth with special needs. CDS secured approval from the Department of Education Superintendent to distribute information about the survey to students receiving special education services. Approximately 440 people started the online survey, and 272 respondents completed the full survey. Participants who completed the survey received a $20 gift card in appreciation for their time.
Focus groups with YSHN and/or their caregivers are currently being conducted to gather related qualitative information. However, CDS is having a difficult time recruiting for focus groups. Partnerships with youth-serving organizations are being considered to develop more effective recruitment strategies.
Results of the needs assessment will be published and disseminated to stakeholders and the public. This project also supports the CDS 5-year needs assessment required for their grant funding.
Mental Health Data Tracker: In FY 2022, FHSD contracted with the University of Hawaii Office of Public Health Studies, which manages the DOH Hawaii Health Data Warehouse (HHDW), to create a Family and Child mental health data dashboard. The Warehouse's user-friendly website, Hawaii Health Matters, houses several data dashboards. Without an epidemiologist, the Data Warehouse has been an effective means to disseminate and access data publicly. Also, epidemiology staff at the Warehouse help ensure reliable analysis, reporting, and documentation for all data measures and sources. Data is also routinely updated from the HHDW dataset, including the major public health surveillance surveys and vital statistics. The mental health data dashboard is the third FHSD project completed with HHDW. Dashboards on oral health and primary care are also available at: https://www.hawaiihealthmatters.org/
HHDW and Title V partnered with the Pediatric Mental Health Access Advisory Group and other community partners to select indicators and design the dashboard launched during Mental Health Awareness Month in May 2023. OPHS helped promote and present the tracker to community stakeholders, and the tracker is being promoted through DOH and community social media sites.
Early Childhood Needs Assessment: The new HRSA Early Childhood Comprehensive Systems (ECCS) grant is designed to improve integration of the maternal/infant health and early childhood systems, which have historically had separate services and programs. To ensure family input to the program's strategic planning efforts, the University Center on the Family (COF) and the Hawaii Children's Action Network conducted a survey of families with pregnant people, infants, and young children to:
- assess the support families receive from state and federal programs, including but not limited to WIC, SNAP, Medicaid, and childcare subsidies, as well as
- collect input on policies, programs, and systems improvements needed for families with young children.
The survey findings will inform the ECCS work to build a more responsive and accessible service system for vulnerable children and families in Hawaii. A report is expected later in Fall 2023.
CDC PRAMS Interns: To address the epidemiology vacancies, the CDC PRAMS program offered Hawaii an opportunity to utilize its 2023 Spring and Summer epidemiology interns to assist with PRAMS data analysis. The interns are focusing on analysis of data for WIC-enrolled mothers.
TeenLink Hawaii Youth Assessment Survey. Data from this 2021 youth-directed survey are being utilized to develop health messaging and outreach. This anonymous survey was conducted in partnership with the Hawaii Department of Health Children with Special Health Needs Program (CSHNP) and TeenLink Hawaii, a youth empowerment project of the Coalition for Drug-Free Hawaii. The survey was conducted from August-October 2021 to develop transition to adult healthcare messaging. The survey was distributed to Hawaii teens and young adults ages 12-24 via various avenues (CSHNP client list, TeenLink Hawaii contacts, partner agencies of CSHN Program) in electronic and paper format. Key findings are reported in the NPM 12 narrative. The 2021 survey built on results from a broader youth survey conducted by TeenLink in 2020 during the height of the pandemic.
Child Surveillance Data: FHSD met bi-annually with the DOH Chronic Disease program (and community partners) through FY 2021-2022 to explore options to generate better data for younger children and families. The National Survey on Children’s Health (NSCH) was deemed of limited value with only state-level estimates (no disaggregated county or Hawaii-relevant race/ethnicity data). Moreover, the small state sample sizes require the data to be aggregated over multiple years to generate stable estimates, limiting the ability to monitor trend changes over time. The group looked at other options, including creating a Hawaii-based child health survey, the feasibility of digitizing school health data, and conducting convenience surveys.
In partnership with the OPHS, the Chronic Disease program developed an online survey of parents with young children in 2022 to generate better nutrition and physical activity data. The 2022 survey utilized questions from the NSCH and was broadly disseminated through Hawaii service organizations and social media. FHSD helped support the survey by funding family incentives and disseminating the survey through Title V service programs. A final report was released in FY 2022. Without a population-based surveillance for children, agencies and programs will rely on ‘convenience’ surveys to generate needed data for program planning and policy.
National Survey on Children’s Health (NSCH): The NSCH addresses the gap in surveillance data for early and middle childhood, CSHN, and their families, including social determinants of health. The data is an important surveillance source to track impacts of COVID on the MCH population. However, as discussed, several issues with the NSCH data limit its utility to inform state-level planning and address health equity.
Disaggregated Data: Unlike many states, the population of Hawaii is largely comprised of Asian and Native Hawaiian/Pacific Islander groups. As described in the Overview, these categories represent diverse and distinct populations with differing historical, cultural, and socioeconomic experiences. When diverse groups are aggregated into large classifications, critical differences in health status are hidden. Thus, data findings can be misleading and contribute to policies and programs that do not address fundamental community concerns or exacerbate existing inequities. Unfortunately, the NSCH data are reported using standard federal race classifications that combine all Asian groups and Native Hawaiian with all Pacific Islanders.
The need for timely, accurate, disaggregated Hawaii race/ethnicity data cannot be overstated. The COVID pandemic saw the Native Hawaiian, Pacific Islander, and Filipino communities demand the Department of Health report disaggregated health data for these populations, not only for COVID but as a standard for all data reporting. During the pandemic, disaggregated data reporting showed COVID most adversely impacted these communities, and the Department responded by partnering with community leaders and organizations to redirect resources to address this need.
Lastly, the NSCH data does not provide county-level estimates. Since Hawaii is an island state, the geographic barriers across counties often result in differing health status and outcomes. This presents a major limitation to NSCH data utility.
State Over-sampling: The MCH Bureau does allow states to fund and develop survey oversampling to generate detailed county and race/ethnicity data. Oversampling is costly and the process to develop the oversample is complex. Without an epidemiologist on staff, designing the oversample would be difficult. To reduce costs, the Bureau recommends generating aggregated datasets over multiple years which means substantial time lags before useable data is available. This approach does not allow for trend analysis since it produces only a point-in-time estimate. The cost to generate the county and race/ethnicity data for Hawaii on an annual basis – far exceeds SSDI funds. Because Hawaii uses Title V funding largely for personnel, funds are not available annually to support an oversampling.
In addition to the funding challenges, accessing data from a Census Regional Data Center (RDC) created additional challenges. Hawaii does not have an in-state RDC. The MCH Bureau recently announced that in-person access to an RDC is no longer required. Without an oversample, the NSCH data will continue to have limited value for program planning and policy development. Hawaii encourages the MCH Bureau to consider expanding the survey sample sizes for states, especially those with ethnically diverse populations.
Public Health Workforce Interests & Needs Survey (PH WINS). In 2022, FHSD began working with Melissa Gambatese, the de Beaumont Foundation (DBF) PH WINS epidemiologist, to analyze Hawaii’s Department of Health (DOH) and Title V agency 2021 survey data. The FHSD sample size was large enough to generate usable results, including data from a new MCH module. Given FHSD’s work with PH WINS, the new DOH administration appointed the Hawaii Title V director as the Department’s lead for the PH WINS survey. The raw dataset was recently acquired, and an analysis plan was developed to address manager/employee questions to help with program planning and policy in the future. Findings of the survey results will be shared in a series of short briefs in future FHSD newsletters. Title V will work with the DOH Communications Office to help share data results and is working with the DOH Office of Health Equity (OHE) to analyze to inform OHE's future work plans. Highlights of Ms. Gambatese’s findings are reported in the Workforce Development narrative.
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