Where’s the Data?

Written by

Daniel Dawes
Daniel Dawes Daniel E. Dawes, J.D. is a health care attorney and consultant in Washington, DC. During health reform negotiations, he worked closely with the White House and Congress, and founded and chaired the National Working Group on Health Disparities and Health Reform – a group comprising over 250 national organizations and coalitions - to ensure that health reform legislation included health equity provisions to reduce disparities in health status and health care among vulnerable populations.

In the wake of health care reform, one of the key health equity issues that needs to be fully addressed is the collection and reporting of data on demographic variables for electronic health records (EHR), particularly for racial and ethnic minority groups. This is a critical issue because without comprehensive data, we are unable to accurately identify and track the disparities in health status and care among vulnerable populations.

The American Recovery and Reinvestment Act (ARRA) of 2009 included provisions requiring health care providers to collect and report data on race, ethnicity, sex and primary language in order to demonstrate meaningful use of EHRs and qualify for incentive payments for Medicare and Medicaid.

The Affordable Care Act of 2010 expanded upon ARRA to require the collection of those four variables as well as disability status in all health care and public health programs, activities or surveys starting in 2012.

Unfortunately, these data collection requirements have caused some consternation and confusion among health providers and individuals alike.  Many physicians don’t understand why they are being required to collect this information and often see it as an unnecessary administrative burden, while many minority patients may be unwilling to provide such data, as they are unsure as to why they are being asked to disclose this information.

This confusion and lack of understanding has led to frustration among physicians, who are required to provide such data in order to qualify for the Medicare and Medicaid payment and reimbursement incentives. The information and communication gap on both sides raises several concerns.

First, if providers and patients don’t understand why this information is being collected, then it becomes even more difficult to collect and analyze the data to identify existing gaps in health status and health care.

Second, if the federal government and health agencies are not conveying to consumers, physicians and other health care providers the necessity for and the benefit of collecting this information, then patients and providers will continue to be wary of this requirement and neglect their responsibilities for collecting and reporting this important information.

In order to maximize the functionality and purpose of EHRs, policymakers and organizations advocating for improved minority health outcomes should address this confusion and provide technical assistance to ensure that health care providers and patients understand how to collect this data, why this data needs to be collected and the importance of this information to enhance patient care.

Improved data collection will lead to better utilization of EHRs and subsequently, opportunities to identify and address healthy equity and disparities.

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