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Eliminating Health Disparities: Measurement and Data Needs
state and among states and the federal government. In answering the questions below, please think specifically about your own agency’s data collection efforts and, where indicated and to the extent possible, the data collection efforts of other entities in your state. While we are interested in race, ethnicity, and socioeconomic status data in general, our analysis will focus on the following data sources: Medicaid data, Hospital Discharge Abstract data, Birth and Death Records, Cancer Registry data, State Health Interview Survey data, and Behavioral Risk Factor Surveillance System data. Therefore, we request that you also focus your responses on the subset of these data sets about which you are aware.
Please respond briefly in writing to the questions below, and return your response to Sara Singer at firstname.lastname@example.org and Jeff Geppert at email@example.com . A conference call will follow.
Costs: What would be the costs of enhancing and standardizing race and ethnicity data collection in your state? Nationally?
What race and ethnicity data do your agency currently collect? Please specify the definitions used and category choices offered.
How is this information collected? Self-reported? Reported by clinician or other third party?
At what level of detail (i.e., individual patient discharge, aggregate) does your agency require this information to be reported?
What organizations (i.e., hospitals, health plans, physician organizations) report this information to your agency?
What race and ethnicity data are voluntary? Required?
What is the approximate level of compliance with these reporting requirements?
Are you aware of differences in race and ethnicity data currently collected by your agency and others within your state? If so, please specify.
How are the data your agency collects currently used in your state? To whom are they reported?
What other entities collect race and ethnicity data in your state, if known? Do you currently cooperate with any of these entities for data collection? Reporting? Other purposes?
Who has the authority to make a decision about the data that your agency collects? Are data elements governed by law, regulation, agency authority, other?
What stakeholders would be opposed to changes to data your agency currently collects?
How would changes in data collection requirements affect implementation of and compliance with data collection? Within your agency?
Front Matter (R1-R16)
Executive Summary (1-13)
1 Introduction (14-20)
2 The Importance of Data on Race, Ethnicity, Socioeconomic Position, and Acculturation in Understanding Disparities in Health and Health Care (21-40)
3 Measuring Race, Ethnicity, Socioeconomic Position, and Acculturation (41-61)
4 DHHS Collection of Data on Race, Ethnicity, Socioeconomic Position, and Acculturation and Language Use (62-82)
5 State-Based Collection of Data on Race, Ethnicity, Socioeconomic Position, and Acculturation and Language Use (83-98)
6 Private-Sector Collection of Data on Race, Ethnicity, Socioeconomic Position, and Acculturation and Language Use (99-117)
Appendix A Descriptions of National Health and Health Care Surveys (129-178)
Appendix B Workshop on Improving Racial and Ethnic Data in Health (179-183)
Appendix C Recommendations on the Use of Socioeconomic Position Indicators to Better Understand Racial Inequalities in Health (184-201)
Appendix D The Role of Racial and Ethnic Data Collection in Eliminating Disparities in Health Care (202-231)
Appendix E State Collection of Racial and Ethnic Data (232-248)
Appendix F Collection of Data on Race and Ethnicity by Private-Sector Organizations: Hospitals, Health Plans, and Medical Groups (249-271)
Appendix G Racial and Ethnic Data Collection by Health Plans (272-287)
Appendix H Biographical Sketches (288-294)