State policymakers and regulators are frequently confronted with questions and concerns about the performance of our health care system, and find themselves without the necessary information to effectively respond. Data about our health care system–from who it serves to the services it provides, from the costs we incur to the outcomes we face–are fragmented, narrow, and siloed, scattered across federal and state sources. State health care regulatory agencies have historically depended on focused data reporting from regulated entities to support their information needs; few have access to comprehensive market data, leaving gaps in states’ understanding of how health care markets writ large–which are not bound by line-of-business, geography or product type– are functioning. 

State health care information gaps have not gone unnoticed. State policymakers across the country–and across the political spectrum–have recognized the need for more coordinated, comprehensive and centralized health care system information and established State Health Data Organizations (HDOs). State HDOs are state-designated agencies or entities that derive information from a diverse array of health care system data to inform policymaking and regulatory decision-making in the interest of the public good. State HDOs have proliferated over the past two decades without a guiding framework or blueprint, creating a diverse spectrum of entities that share a common purpose, but whose programs, operations and governance can vary significantly. 

This brief, made possible by the generous funding of the Robert Wood Johnson Foundation and the input of nearly two dozen state HDO and national health data thought leaders, seeks to offer a starting framework—a first definition—for what a state HDO is, how these entities can support evidence-based policymaking, and what core program, operational and functional elements they should comprise.