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A toolkit for collecting race, ethnicity, and primary language information from patients.
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How to Use the Toolkit

The Toolkit is designed to help hospitals, health systems, community health centers, medical group practices, health plans, and other users understand the importance of collecting accurate demographic data. The specific focus of this document is on the collection of race, ethnicity and primary language data, but acknowledges recent federal legislation requiring the collection of sex and disability information. When appropriate this new data is included in the toolkit to help inform health care organizations about the benefits of its collection and use to improve communication with patients and better ensure quality care. However, the focus of this toolkit is to assist health care organization assess their organizational capacity to collect this information and implement a systematic framework designed specifically for obtaining data related to demographic information and communications needs directly from patients/enrollees or their caregivers in an efficient, effective, and respectful manner. This section provides information about the Toolkit's design and contents.


 

Toolkit Design

The Toolkit's contents are outlined at left. Each section has a main heading followed by subheadings. In some instances, these subheadings are broken down further. You can obtain a description of each main heading's contents by clicking on the title.

We designed the Toolkit so you can quickly look at information targeted specifically to your role or needs within your organization. There is considerable overlap in the content for different audiences. We hope you will target the items in the list of contents that are most useful for you and find the Toolkit easy to navigate.

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Toolkit Contents

The Toolkit content is designed to help you navigate the most frequently encountered questions about collecting race, ethnicity, and primary language data. The topics include information about:

  • Who should use the Toolkit
  • Why collect demographic and communications data
  • Why collect data using a uniform framework
  • The nuts and bolts of data collection
  • How to ask the questions
  • How to use demographic and communications data to improve quality of care
  • How to train staff to collect this information
  • How to inform and engage the community
  • How to address the communication access needs of populations with sensory disabilities that may impede communication
  • Available tools and resources
  • Answers to frequently asked questions
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Resources

  • Overview presentation on collecting race, ethnicity, and primary language data
  • Staff training presentation on collecting race, ethnicity, and primary language data
  • Presentation on addressing concerns from patients with applicable questions and answers
  • Survey on collection of race and ethnicity data by hospitals
  • Office of Management and Budget's race and ethnicity definitions
  • Office of Management and Budget's granular code set on race and ethnicity
  • Centers for Disease Control and Prevention's granular code set on race and ethnicity
  • Reference booklet for staff on data collection categories
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