5. Data Gaps

NC DHHS should ensure the public has access to timely and useful data.

Implementation: • NC DHHS should create an online data dashboard that includes maternal and SCD morbidity and mortality, disaggregated by specific demographics.

North Carolina Context

CMS requires state Medicaid agencies to submit enrollment, service utilization, payment, provider, and other information from claims data every month, through a standardized data format. The required data include the number of pregnant enrollees and average cost of pregnancy benefits. However, there is no federal requirement for state Medicaid agencies to collect data regarding the number of enrollees with SCD, or mortality and morbidity statistics specific to SCD and maternal populations.

Data collection is more rigorous at the state level, especially in North Carolina where DHHS has made their commitment to reducing data gaps as a key goal. We applaud NC DHHS’ plan to collect data on maternal and SCD morbidity and mortality, disaggregated by specific demographics. NC Medicaid last publicly reported data from the Health Effectiveness Data and Information Set (HEDIS) in 2016. This data includes frequency of prenatal care and timeliness of prenatal and postpartum care.151 The NC DHHS website has no publicly available data on the prevalence, mortality, or comorbidities rates of SCD or maternal populations. However, NC DHHS received a surveillance data grant from the Centers for Disease Control and Prevention in FY2021 to support these data collection efforts.152 While there is some uncertainty in implementation as NC Medicaid transitions from fee-for-service to managed care, NC DHHS released a detailed plan for data collection (although there is no detailed plan for publicizing data post-managed care transition) and PHPs will be expected to use data to promote health equity. NC DHHS also plans on requiring each PHP to submit stratified enrollment data, such as age, race, ethnicity, gender, primary language, long-term services and supports needs status, disability status, and geography (rural/urban and service region). Per a NC Medicaid employee, NC DHHS has data on SCD prevalence for all children with Medicaid disaggregated by gender, age group, race, ethnicity, rural/urban indicatory, primary language, foster care status, and disability, but the dataset is not public.

Evidence

Data gathering is the first step in making informed policy decisions for remedying health inequities. Without Medicaid-specific data stratified by demographic groups, NC DHHS cannot be confident that PHPs are providing equitable care nor can NC DHHS adequately address barriers to quality health care.153 All data collected should be made publicly available, except in cases of privacy issues due to small sample sizes. Timely, accurate, and accessible data allow Medicaid enrollees, providers, advocates, and researchers to adequately understand where NC DHHS should focus. This recommendation has challenges internal to NC DHHS, such as limited staffing capability to create consumer-friendly material that people--who might have English as a second language or access to the internet only on mobile devices--can easily intuit. We recommend that NC DHHS take the next step beyond collecting data and commit to publicizing and updating these statistics every month on a multilingual and userfriendly dashboard. Publicizing data will hold PHPs accountable to the public, including Medicaid enrollees, providers, advocates, and policymakers. The public dataset should be able to be disaggregated by more than one

demographic (e.g., by race and geography). Sharing disaggregated data in an accessible format will help fulfill the promise of managed care by building trust with communities across the state and informing stakeholders as to the progress of PHPs to date. NC DHHS should also keep historical data available online to allow the public and agencies to track health outcomes over time. This dataset would be in addition to the health equity report the North Carolina External Quality Review Organization (EQRO) will develop.154 We recommend EQRO publish this health equity report in a timely manner, disaggregated by relevant demographic groups—age, race, ethnicity, gender, primary language, long-term services and supports needs status, disability status, and geography— listed earlier, and by plan to serve as scorecard for each plan.

Additional Considerations

NC DHHS should consult Georgetown University Health Policy Institute’s tracker of state Medicaid dashboards focused on children’s health.155 Two states in particular—Texas and Washington—stand out as being user-friendly and comprehensive.156 This is a medium-term investment. PHPs are already collecting this data via provider claims reports; thus, NC DHHS will not need to amend the PHP contracts. NC DHHS will need to change their internal processes. The biggest lift for NC DHHS will be dedicating personnel to creating a new, public database and infographics.