The MCH Epidemiology Unit coordinates several core data collection efforts that are supported by Title V and SSDI, in addition to other funds including the Pregnancy Risk Assessment Monitoring System (PRAMS), a 3-year follow-up to PRAMS called the Childhood Understanding Behaviors Survey (CUBS), the Alaska Birth Defects Registry (ABDR), and the Maternal Child Death Review (MCDR). PRAMS and MCDR both receive some federal funding through the CDC. The Alaska Longitudinal Child Abuse and Neglect Linkage project (ALCANLink) is largely supported by Title V, in addition to private contractual funds. ALCANLink is a key data linkage project that is used to inform programs, especially around our priority to reduce child maltreatment. The ALCANLink project links birth and death certificates, PRAMS, CUBS and Medicaid data with other state-specific administrative datasets (notably the Permanent Fund Dividend dataset, child protective services, and specific elements provided by the Department of Education and Early Development). A major accomplishment of ALCANLink over the past year was launching a replication project with the state of Oregon, with results currently being written up for publication in a peer-reviewed journal. The success of this replication project indicates the ALCANLink methods are internally valid and economically sustainable.

The Alaska Birth Defects Registry (ABDR) data are used to estimate the prevalence and trends of defects as well as provide data on the allocation of services for CYSHCN resulting from birth defects. ABDR has successfully on-boarded a number of the new reporting agencies, specifically health insurance companies, creating a more complete and robust surveillance system. All ABDR reports are up-to-date, and the registry is now focused on expanding the number of condition specific reports published on its website and increasing its capability for geographic analysis. All ABDR staff are partially or fully-funded by Title V. Ongoing and new activities related to ABDR are described in this application/annual report in specific strategies in the CYSHCN domain.

Since 2006, Alaska has used Title V funding to increase and enhance the availability of early childhood population-based data through the CUBS program. CUBS is a population-based 3-year follow-up survey to PRAMS that uses similar mail with phone follow-up methodology. Since ongoing data collection began in 2008 and through 2020, 12,937 people have been included in the “sample” and 7,331 have responded to CUBS. CUBS data are weighted annually to represent the total population of people who delivered live birth in the state three years earlier.

Based on input and feedback from data users and other stakeholders the Phase 6 CUBS questionnaire was implemented in 2020 with revisions to the survey questions. Updates relevant to Title V priorities and programs included changes to the question about developmental screening, including a new follow-up question that asks whether a health care worker reviewed the questions with the parent, and adding back in a question from an earlier phase about enrollment in Early Intervention. Continuing questions on CUBS include well-child visits, having a health care worker who is familiar with the child, and barriers to getting health care for the child. New questions included topics such as witnessing violence in the neighborhood, home safety, barriers related to lack of providers who speak the same language or are from the same culture, and experiencing scary natural events.

CUBS data are used to track trends and disparities in health outcomes and behaviors among young children in Alaska and their families. CUBS data are also used by a variety of Title V programs and internal and external partner agencies to inform and evaluate public health programs. CUBS is the data source for Alaska’s current SPM 4, Percent of mothers of 3-year-old children whose family has an emergency plan in case of disaster, and data from CUBS are used to inform ongoing needs assessment activities, particularly for the child domain. Between April 2018 and May 2019 and then again in January through May 2020, CUBS collected supplemental data to assess community awareness of the Help Me Grow Alaska program. The DPH Physical Activity and Nutrition program used CUBS data to inform the 2019 launch of a media campaign targeting parents of pre-school age children with education about sugar-sweetened beverages, and in 2020 and 2021 they are using CUBS survey data and supplemental questions to evaluate this campaign. Two indicators from CUBS, well child checks and sugary drink consumption, were selected as Healthy Alaskan 2030 Leading Health Indicators and will be tracked annually for the next ten years as part of this State Health Assessment. In 2020, the CUBS research dataset was requested by and shared with a Fairbanks student studying the impact of the removal of public water fluoridation and used for a PhD dissertation looking at persistent postpartum depression AK, including which populations were at highest risk and where there were gaps and needed services. Aggregate results of specific questions were shared with Healthy Alaskans, with United Way of Anchorage (reasons children aren’t in preschool), and with a tribal corporation (food security measures among their stakeholder population).

The CUBS program team worked closely with the DHSS IT Business Applications team over the past two years to design, test, and move to production a new database for CUBS operations. The goals for the new database included: 1) create a web-based interface for contact tracking and survey status management, 2) migrate CUBS data from MS Access to a DHSS standard platform to increase stability, longevity, and flexibility, and 3) prepare to add an online survey component in 2021. The first two goals were achieved in 2020, with the new database going “live” in October 2020. Preparations for an online survey are currently underway, with the updated goal to have this component ready for data collection in March 2022.

Finally, during the past year, the Senior MCH Epidemiologist developed an R Shiny app beta version for displaying CUBS data online. The app allows users to dynamically group and sort the survey results by other survey measures or demographic categories as well as over time and region of residence. While the app is currently only accessible to internal users, the program plans to launch a public version in the upcoming months to increase the availability and accessibility of CUBS data for all users. This app will replace the CUBS data currently available online through an online query-based module in the Alaska IBIS system, which is being decommissioned and will be taken offline soon.

During the next five years, the MCH Epi Unit plans to build upon the success of the CUBS R Shiny app and experience supporting the Division of Public Health’s online COVID Data Hub to create new online dashboards and other publications to consolidate and share data related to all five population domains. A goal of the new 2020-2024 Division of Public Health Strategic Plan is to increase the availability of reliable, trusted public health data to improve the health of Alaskans. As such, Title V Epidemiologists are working with representatives from other Sections in the Division to coordinate data dissemination efforts and establish standards for online data sharing. The Senior Epidemiologist has provided guidance to the AK BRFSS team which is seeking to develop an online app in R Shiny similar to the one created for CUBS. The Alaska Perinatal Quality Collaborative (AKPQC) team in WCFH recently determined that the ArcGIS Data Hub platform used for COVID data would work well for facility quarterly data submission and for visualizing results of the QI initiatives. The CDC PHAP based in the MCH Epi Unit is currently developing a beta version of an AK-PQC data hub that will be launched later this year.

Epidemiologists in the Unit have used expertise gained through the implementation of the PRAMS and CUBS surveys to conduct ad hoc surveys to collect information on emerging issues. During the spring and winter of 2020, the Unit fielded a series of four online surveys to collect information on the impact of the COVID-19 pandemic on Alaskan families. The results were quickly analyzed and published on the MCH Epi Unit website in several factsheets, and were shared through press releases, online blog posts, and presentations.

A key challenge to Alaska’s efforts to improve the use of MCH data include lack of sufficient IT capacity to support acquiring new software that meets DHSS needs for HIPAA-compliance and security. This impacts the ability to maintain up-to-date software used for analysis, data visualization, and data storage. Another challenge is not having sufficient staff capacity in public communications as we seek more innovative ways to share data.