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A toolkit for collecting race, ethnicity, and primary language information from patients.
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Why Collect Demographics and Communication Data

Measurement and outcomes have become increasingly important for demonstrating the effectiveness of health care. Evidence from the last 20 years shows that racial, ethnic, and language-based disparities remain present in health care. The Institute of Medicine (IOM) report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, issued in 2002, is one of several prominent studies documenting this problem. Similar evidence suggests that disparities also exist according to gender and disability status. Therefore a clear need exists to document and improve the quality of care provided to vulnerable populations. Data to track these disparities and develop effective programs to reduce and eliminate them is beneficial.

Disparities in health care can be addressed through a quality of care framework if data on race, ethnicity, and primary language are available. According to the report "The Right to Equal Treatment" issued by Physicians for Human Rights, data collection has long been central to the quality assurance process. The data may also help evaluate population trends and help ensure nondiscrimination on the basis of race and national origin, such as providing meaningful access for persons with limited English proficiency.

Since passage of the 1964, the Civil Rights Act, hospitals and health care organizations have been allowed to collect information on patients’ race, ethnicity, and spoken language to improve health care quality, and many health care agencies are mandated to collect this information. Today there are state and national efforts to standardize and integrate collection of race, ethnicity, and language data into models of patient-centered care. The U.S. Department of Health and Human Services (HHS) is advancing the standardization and collection of race and ethnicity, as mandated by Section 4302 of the Affordable Care Act. Also under the American Recovery and Reinvestment Act funding has been authorized by the Medicare and Medicaid electronic health records Incentive Program for hospitals that can demonstrate they are “meaningful users” of EHRs and, as part of that criteria, hospitals must have systems in place to collect demographics data. Furthermore, accreditation standards under The Joint Commission include the collection of patient race, ethnicity, and language as part of its Patient-Centered Standards for Hospitals.

In addition, deaf and hard of hearing populations and those with visual impairment face challenges in accessing high-quality health care. According to the National Institute on Deafness and Other Communication Disorders report, "Statistics about Hearing Disorders, Ear Infections, and Deafness" (2007), approximately 28 million Americans have hearing loss. Findings from the 2008 National Health Interview Survey (NHIS) Provisional Report established that an estimated 25.2 million adult Americans reported they either "have trouble" seeing, even when wearing glasses or contact lenses, or that they are blind or unable to see at all.

Valid and reliable data are fundamental building blocks for identifying differences in care and developing targeted interventions to improve the quality of care delivered to specific populations The capacity to measure and monitor quality of care for various racial, ethnic, and sensory impaired populations rests on the ability both to measure quality of care in general and to conduct similar measurements across different racial, ethnic, and linguistic groups. This section provides information about why your health care organization should collect these data.





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