This is an excerpt from a Manatt white paper made possible by the generous support of the Robert Wood Johnson Foundation. Click here to read the full report and register for our live webinar discussion of health data organizations on Tuesday, October 22.
 

Overview

State policymakers and regulators are frequently confronted with questions about the performance of our health care system and find themselves without essential information to effectively respond. State leaders from across the country have recognized the need for more coordinated, comprehensive and centralized health care system information and established State Health Data Organizations (HDOs) to address these information gaps. 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 can provide policymakers, regulators, and the public with information to better understand statewide concerns around health care affordability, costs and cost growth, health conditions and service utilization, health care outcomes and disparities, health care system competition and sustainability and the impact of policy and program reforms This brief offers a framework 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.

 
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 –which are not bound by line-of-business, geography or product type– are functioning.  State HDOs provide policymakers and regulators with a consolidated and comprehensive view of a fractured health care market, centrally collecting and analyzing health care data across purchasers, payers and providers. Their perspectives can be essential for states seeking to address policy issues and priorities that cut across markets, geographies and populations.
 
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.  In this brief, we provide a framework for how state HDOs may be shaped to effectively serve state health information needs, helping state leaders to set their own strategic visions for HDO establishment, including:

• How can our state establish an HDO that best reflects and serves our local policy and program priorities?
• How can our state establish an HDO that enhances the work of other health care agencies and departments, and contribute to Learning Health Systems and the generation of real world evidence?
• How can our state establish an HDO that reduces the administrative burden of data suppliers, allowing for prior manual reporting to be sunset or streamlined?
• How can our state protect an HDO from external influence, while maintaining a governance structure and financial accountability that ensures its work advances the state’s health information needs?
• How can our state pair or integrate our data resources to better understand market performance or the changing health of their populations?
• How can our state ensure that our health data collection, management, and release policies are compliant with federal and state laws and the latest industry standards? Where are additional safeguards recommended to further protect data from unintended access or unintended use?

 State HDOs, if effectively designed and sustainably financed, have the potential to provide state policymakers and regulators with a fact-based foundation on which rigorous policy debate can occur on behalf of the public good.
 
Click here to read the full report and help develop answers to these questions.