The primary purpose of State Systems Development Initiative (SSDI) grant is to develop, enhance, and expand state Title V MCH data capacity to conduct needs assessment and performance measure reporting for the Title V MCH Block Grant program. The key MCH datasets identified in the SSDI grant are used for surveillance, needs assessment, planning, public education, and evaluation. The table below shows the accessibility of each dataset by the Hawaii Title V programs as of FY 2019.

The change to the table from last year is Hawaii Title V’s direct access to WIC data. With the installation of a new data system, WIC no longer has direct access to its data. A private third-party vendor now collects, analyzes and reports data to the WIC program.

Hawaii used its SSDI funds to support the work of the Hawaii PRAMS program in additional to meeting data requirements for the Title V needs assessment and annual report. SSDI funding is critical to sustain PRAMS operations and staffing. The total annual costs of the Hawaii PRAMS Program increased significantly, while the Centers for Disease Control and Prevention (CDC) PRAMS funding continues to decline. In FY 2019, FHSD reorganized the PRAMS program to contract for operational services and reduce personnel costs. As of April 2019, SSDI funds are no longer used to support PRAMS.

In 2017, enforcement of a Hawaii Revised Statutes law related to data sharing policies for the Hawaii vital records office severely limited and stopped data sharing from the Hawaii Vital Records office for PRAMS. During the 2018 legislative session, FHSD worked with the Office of Health Status Monitoring to pass legislation to allow department of health employees access to vital records data. Since July 2018 DOH employees may request and receive individual record level vital statistics data after approval from the Department of Health (DOH) Institutional Review Committee.

The restricted access to vital statistic data resulted in temporary suspension of Hawaii PRAMS program data collection which relies on birth records to draw its monthly sample. With the law change, Hawaii PRAMS data collection resumed in December 2018. In February 2019, the Institution Research Committee and the Director of Health approved FHSD’s ongoing access to birth, death, and fetal death records.

The Healthcare Association of Hawaii (HAH) is the new manager for all hospital data in the state. HAH is the nonprofit trade organization serving Hawaii’s hospitals, skilled nursing facilities, assisted living facilities, home care companies, and hospices. The data is managed by a new subsidiary created in 2018, the Laulima Data Alliance. Data is available for purchase. DOH established a new data governance committee which includes a representative from HAH. This committee approves and oversees/coordinates all hospital data requests.

At this time Hawaii is not seeking to establish linkage between the key MCH datasets and vital statistics given the recent restrictions to vital statistic data. Newborn screening data was linked to vital statistics in the past and may explore linkage again when feasible. Hawaii SSDI linkage activities are focused instead on the development of an All Payers Claim Database (APCD) which would include Medicaid, Medicare, and State Employee Union claims data. The project is a partnership between DOH, DHS, and the Insurance Commissioner. It is being managed by DHS through a contract with the University of Hawaii. The data is undergoing quality testing. The Data Analytics Group at DHS will analyze data requests. Several requests for analysis for Department of Health are on the list for analysis. There are no plans to release data directly to researchers at this time.

SSDI data activity is limited due to the departure of the Hawaii program’s two epidemiologists. Dr. Don Hayes, MPH, M.D., the CDC MCH Epidemiology Assignee accepted a position at CDC Atlanta and Dr. Tiana Garrett-Cherry, PhD, MPH relocated back to Virginia. Hawaii continued to recruit for the position vacancies but was unsuccessful to date. FHSD is working to contract with Dr. Garrett-Cherry to provide epidemiology services to complete Title V needs assessment data reporting and development of data products/reports.