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Research Resources

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Data Collection: Racial, Ethnic and Primary Language
A Toolkit for Collecting Race, Ethnicity, and Primary Language Information from Patients The Health Research and Educational Trust, with its partners, has created this toolkit for collecting race, ethnicity, and primary language information in health care organizations. It is designed to help hospitals, health systems, community health centers, health plans, and other potential users in understanding the importance of accurate data collection, assessing organizational capacity to do so, and implementing a framework designed specifically for obtaining information from patients/enrollees about their race, ethnicity, and primary (preferred) language efficiently, effectively, and respectfully.
Assessment of State Laws, Regulations and Practices Affecting the Collection and Reporting of Racial and Ethnic Data by Health Insurers and Managed Care Plans A review of state laws, regulations, rules and other written policies to determine the extent to which health insurers and managed care organizations are permitted to collect and report racial, ethnic and primary language information. In addition, the study examines the distinct domains of and overlap among civil rights laws, confidentiality laws, and health insurance/managed care laws. A report on Virginia specific laws, regulations, rules and other written policies is also available at this web site.
Collection and Use of Race and Ethnicity Data for Quality Improvement This America’s Health Insurance Plans (AHIP) document provides key analytical points related to collecting data, as well as a guide to collecting data on physician/clinician race, ethnicity and primary language.
Health Insurance Plans Address Disparities in Care: Highlights of AHIP/Robert Wood Johnson Foundation Quantitative and Qualitative Research “This issues brief summarizes the extensive finding by AHIP and RWJF, the challenges and opportunities for expanding data collection for quality improvement, and the next steps to systematically collect, comprehend, and reduce the health disparities that exist for minorities.”
The Legality of Collecting and Disclosing Patient Race and Ethnicity Data A Robert Wood Johnson Foundation and George Washington University Medical Center study of “whether the collection of patient data by race or ethnicity, as part of a program of quality improvement, violates the law.”
Racial, Ethnic, and Primary Language Data Collection in the Health Care System: An Assessment of Federal Policies and Practices Using interviews conducted with administrators at federal health agencies, this report finds wide gaps between the goals of federal initiatives to eliminate racial and ethnic disparities in health care, such as Healthy People 2010, and the efforts of federal health agencies to collect and report data needed to help achieve these goals. The report provides the first comprehensive analysis of the policies and statutes governing the collection of health care data by race, ethnicity, and primary language.
Race, Ethnicity, and Linguistic Isolation as Determinants of Participation in Public Health Surveillance Surveys To plan, implement, and evaluate programs designed to improve health conditions among racial and ethnic minority populations in the United States, public health officials and researchers require valid and reliable health surveillance data. Monitoring chronic disease and behavioral risk factors among such populations, however, is challenging. This study assesses the effects of race, ethnicity, and linguistic isolation on rates of participation in the Behavioral Risk Factor Surveillance System (BRFSS).
Tools to Address Disparities in Health: Data as Building Blocks for Change: Data Collection Toolkit for Health Insurance Plans/Health Care Organizations “America’s Health Insurance Plans (AHIP) has designed this toolkit to assist in broadening our members’ understanding of the issues surrounding data collection and its promising impact on improving quality care.”

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