Data Governance

Artificial intelligence (AI) tools, particularly those that use natural language processing (NLP), are becoming increasingly prominent in healthcare delivery. For these systems to operate safely and reliably in clinical settings, they require high-quality training datasets drawn from multiple sources, including electronic health record (EHR) data, that closely reflect real-world conditions.

The United States (U.S.) faces urgent health challenges, including poor maternal and childhood health outcomes, childhood obesity, opioid use disorder, cancer, and chronic conditions, which require personalized care tailored to each patient’s unique circumstances.

Patients, clinicians, decision makers, and other stakeholders depend on robust, evidence-based information to make informed health care decisions. Linking Medicaid data to other sources enables a deeper understanding of how Medicaid services and interventions influence health outcomes.

This report provides information to state, tribal, and local child welfare and behavioral health agencies that are interested in linking their Medicaid and child welfare data.

The authors conducted a landscape scan to identify environmental data suitable for health services research (HSR) and patient centered outcomes research (PCOR). Additional research was done to uncover examples of and opportunities for data linkage with other HHS data.

The Department of Health and Human Services (HHS) has several different policy groups such as the HHS Data Council, Data Governance Board, Evidence and Evaluation Policy Council, and the HHS AI Council that frequently use many terms related to data, but likely with inconsistent understanding of their definitions and how these terms should be used.

Introduction and Background Overview The data collection systems sponsored by HHS are critical to the HHS mission, and they also provide most of the national statistical capacity to monitor the health of the population and the functioning of the health care, public health and human services systems.