Improving Access to Health Care Data: Title and subTitle BreakThe Open Government Strategy

Access to high-quality data is critical to innovation, quality improvement, and increased efficiency in health care. The federal government has signaled that expanding access to and improving the quality of health care data for the purpose of research is a priority. In its report to Congress,¹ the Federal Coordinating Council for Comparative Effectiveness Research emphasized the need for investment in data infrastructure and access to support comparative effectiveness research. The Office of the National Coordinator for Health Information Technology included the promotion of a nationwide health information technology infrastructure to facilitate health and clinical research as part of its mission.²

The April 2010 release of the Department of Health and Human Services' (DHHS’) Open Government³ strategy was a major step forward in expanding health data access. The DHHS developed the strategy in response to President Obama's Open Government Directive⁴ —a call for federal agencies to create practical, public access to information they maintain internally. The DHHS has begun publishing 12 data sets that previously were unavailable to the public, created public management “dashboards” for the Centers for Medicare & Medicaid Services (CMS) and the US Food and Drug Administration (FDA), and developed other new resources. The data sets include Medicare Part B National Summary files from 2000-2008. Other new resources include innovative tools that help lay users interpret and analyze publicly available DHHS data such as a CMS Compare tool that allows users to more easily access and interpret quality-performance data across multiple points of care.⁵

The Open Government strategy is an excellent step forward. If the initiative is to achieve its potential, the DHHS should follow a set of 3 principles in its ongoing and future efforts to make government data more valuable and accessible. These principles and their potential to harness the power of the government's data are evidenced in 2 ongoing efforts: the Community Health Data Initiative—part of the Open Government strategy—and a multipayer claims database project for comparative effectiveness research. In this Commentary, we discuss the 3 principles and exemplary projects.

Meaningful expansion of data access for researchers and other users is needed to improve the public's health. Three issues need to be addressed: cost and timeliness of data access, tiered access models, and aggregating diverse DHHS data resources in usable forms. In terms of costs and timeliness, a first step will be creating competition among potential providers of government data. The Research Data Assistance Center (ResDAC) has a 5-year, $5 million contract from CMS as the exclusive provider of complete, adjudicated Medicare and Medicaid claims data to researchers.⁶

Under the contract, ResDAC provides free expert assistance to researchers. The cost price of data acquisition for researchers, however, can reach $50 000 and beyond depending on the research question. This price reflects fixed labor and data infrastructure costs distributed over a relatively small user base. Competition could increase access and reduce cost. An approach in which DHHS develops a few key portals with tiered access into its data resources could also increase data usability and access. Expanding the limited data sets available and decreasing barriers to access for researchers is necessary. In addition, downloadable public-use data sets that allow researchers and other users to analyze Medicare and Medicaid data, including potentially following beneficiaries with unique random identifiers longitudinally over time while maintaining privacy, could stimulate numerous breakthroughs.

The DHHS should leverage nongovernmental partners for increasing access to data and developing ecosystems with associated applications and tools to maximize the usefulness and effect of the data. As in other segments of the economy, readily accessible data can generate innovative solutions to problems of health care quality and efficiency. Innovation in analytical tools ranging from geospacial mapping techniques to sophisticated data aggregation platforms exist in the private sector. Through partnerships, the federal government could stimulate new investment in and access to such tools.

The DHHS must view its data as a strategic asset and expand data quality, completeness, and access iteratively over time, influenced by data users. The data should be released in standardized formats without intellectual property constraints. Also, the DHHS and the private sector need to communicate and create awareness of data availability to ensure use.

A specific example of creating broader data access is Community Health Data Initiative, a new public-private effort that aims to help individuals understand health and health care performance in their communities to spark and facilitate action to improve performance.⁷ The DHHS is providing to the public, free of charge, a Community Health Data Set harvested from across DHHS—a wealth of easily accessible, standardized, structured, downloadable data on health care delivery, health, and determinants of health performance at the national, state, and county levels, as well as by age, sex, race/ethnicity, and income (when available). The initiative offers hundreds of measures of health care quality, cost, access, and public health through a single access point. The government is engaging partners such as technology companies, media, consumer advocates, employers, and others to develop applications and tools to use the data to raise awareness of community health performance, increase pressure on decision makers to improve performance, and help facilitate and inform action to improve performance. Specific tools for improving health showcased at the launch of the initiative included interactive maps and data visualization tools by Microsoft, Google, and others to guide health care decision making, community improvement social networking, and Global Positioning System (GPS) tracking of asthma inhaler use.⁸ These are examples of how the DHHS is making a catalytic investment by providing data in an organized, free manner that engages the diverse talents of a network of nongovernmental stakeholders to use the data to improve population health.

Another example of leveraging DHHS data and catalytic investments to create broader access is the current comparative effectiveness research portfolio. Investments were made in clinical data networks, patient registries, practice-based networks, consumer tools, and claims data. The recently announced multipayer claims investment illustrates the principles of broadening access to data and collaborating with the private sector.⁹ The DHHS plans to contract with a private-sector vendor with experience aggregating, analyzing, and producing research-ready claims data files. States, employers, and other owners of claims data could contribute data to the venture and could be users of the data resource. This resource will potentially provide the first multipayer database representative of the nation's diverse population in terms of geography, age, race, ethnicity, and multiple payers including Medicare, Medicaid, and private payers. The effort will include a public-private governance board and focus on comparative effectiveness research and improving health. The model will test the ability of the DHHS to work with a private vendor to broaden access to its data. Through data-use agreements, the DHHS will ensure proper use of the data for research purposes. A multipayer claims database would offer significant benefit to the CMS, researchers, and others. The DHHS will potentially be able to better evaluate regional variation in care, measure physician performance, benchmark costs with private payors, and track beneficiaries into and out of Medicaid.¹⁰ Researchers will have access to a new research tool that could help answer questions not previously addressable with claims data and possibly be a lower-cost option. Hospitals, physicians, and quality improvement researchers could use these data for benchmarking and to identify targets for improvement efforts.

The DHHS should be applauded for an excellent start to making government data more open and accessible. The critical steps outlined above will be necessary for the US federal government and the DHHS to succeed in producing more examples such as comparative effectiveness research investments and the Community Health Data Initiative. Government must expand access to its data, leverage nongovernmental partners and applications, improve data iteratively, and create awareness to maximize the power of the data to improve public health.