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This posting includes a report prepared by the RAND Corporation, “State All Payer Claims Databases Understanding the Current Landscape and Challenges to Use,” which builds on a 2021 report “The History, Promise and Challenges of State All Payer Claims Databases.” The new report provides additional detail on the objectives of and use cases for APCDs, the current APCD landscape, and implementation challenges that constrain the use of APCDs for some valuable applications.

The RAND report is introduced by an ASPE summary, “Linking State Health Care Data to Inform Policymaking: Opportunities and Challenges,” which describes the Department’s interest in these databases and an initial step the Department is taking towards the objective of the President’s Fiscal Year 2023 budget request to build a national-level APCD.

The building blocks for health services research, informed policy making, and health care system transparency are composed of data. Ideally, these data track how well individuals are served by our health care system across the country, over time, and across payers. The federal government, state and local policymakers, and researchers need these kinds of data to assess where there are health care challenges to be addressed and to develop evidence-based programs and interventions to improve health equity, access to care, quality, health outcomes, and value in health care. Such data can be used to monitor, research, and address major national concerns such as the alarming decrease in life expectancy that has occurred in the United States over the last several years, the opioid epidemic, the impacts of the coronavirus pandemic and long-COVID, cancer research, and other pressing health care policy issues, in the context of over $4 trillion in U.S. spending on health care.   

The data we need often already exist, but they frequently reside in siloed repositories. The data can be difficult, expensive, or cumbersome to access, and the data elements may not be structured in a way that they can be readily linked and compared with data from other repositories. The National Academy of Science and Education (NASEM) issued a May 2022 report, Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade, that highlights the need for a more robust data infrastructure that includes data on the cost of care and social drivers of health (among other issues), and that provides data that can be tracked longitudinally and linked across databases. The Office of the Secretary will be using the Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) to help support this goal. [https://www.nationalacademies.org/our-work/building-data-capacity-for-patient-centered-outcomes-research-an-agenda-for-2021-to-2030]

One project being launched with funding from the OS-PCORTF is an effort to build a pilot database with a goal of providing greater transparency into the outcomes, effectiveness, and costs of our health care system, building on a base of health care claims data currently being collected at the state-level. While a growing body of academic and policy research is demonstrating the value of state collected claims data for health care research, such data resources have various limitations, as discussed in greater detail below. One of the most notable limitations is that research findings using these data may be limited in in scope to the state collecting the data. Even if a researcher is able to gain access to data from multiple states, it may not be readily possible to combine data across states to support regional or national research, because the data from different states may not share a common format or critical variables may be defined differently across APCDs.
While a number of state APCDs were built, in part, using federal funding, they do not receive federal support on an ongoing basis to support their operations. The continually growing number of states operating or developing APCDs illustrates the value states see in these resources. The value of such resources is further evidenced by the growing body of academic and policy research being conducted on state APCD data. While individual state APCDs have proven themselves to be informative resources for analyses of health policy topics at the state level, they do not easily allow for cross-state analyses because they vary in how they report data as described in greater detail in the below report.

A similar situation once existed for hospital discharge data. Over a number of years, AHRQ was able to work with individual state entities contributing their data to the Healthcare Cost and Utilization Project (HCUP) to establish a common data model across statelevel discharge databases. This effort began with a handful of participating states and is now the largest interconnected hospital-based data resource, representing 48 states and the District of Columbia. This resource is regularly used by health policy analysts to address national level research on a wide variety of topics including informing the distribution of ventilators during the early months of COVID as well as assisting federal, state, and local officials when they need to determine how best to deploy medical resources in response to national disasters. Building a national level APCD would go beyond hospital data and could one day allow for a similar level of analytic rigor applied to some of the nation’s most pressing health care challenges.  

This is the vision for the President’s FY 2023 budget request and initial pilot work with states that will be undertaken by the Department in the coming months to prepare for a potentially more comprehensive initiative.

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