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hret disparities toolkit
a toolkit for collecting race, ethnicity, and primary language information from patients
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Why Collect Data Using a Uniform Framework

The uniform framework provides a process improvement tool for health care organizations to systematically collect demographic and communications data from patients or their caregivers. Using this framework results in more accurate and complete data. Health care organizations with data from their own institutions may, in turn, use the information to reduce health care disparities, develop targeted initiatives to improve quality of care, and provide patient-centered care.

The elements of a uniform framework include:

  1. A rationale for why the patient is being asked to provide information this information.
  2. A script for staff to use each time so that they ask questions in a uniform fashion.
  3. A method for allowing patients to self-identify their information.
    1. A standardized approach for "rolling up" granular responses to the Office of Management and Budget (OMB) categories for analytical and reporting purposes and meeting ACA requirements. 
    2. Assurances that the data will be held confidential and that a limited number of people will have access to the data, and a mechanism to guarantee this claim.

    Look to the blue Links column to the right for helpful resources.

    Current Practices

    Hospitals

    Hospitals play a major role in a community's health care delivery system and their infrastructure for collecting and using race, ethnicity, and language data is still developing.

    • 92% of hospitals report collecting data on race/ethnicity.
    • 84% of hospitals report collecting primary language data in the patient medical record.

    Medical Group Practices

    Little is known about the collection of data on race and ethnicity in medical group practices. Medical groups are less likely than hospitals to collect race and ethnicity data (Nerenz, Currier, and Paez 2004).

    • 75% of medical groups that responded to one survey did not collect race/ethnicity data because they thought it was unnecessary or that collection was potentially disturbing to patients.
    • Medical groups that collected the data did so primarily for internal quality improvement or disease management purposes, and some were closely affiliated with hospitals that collected data on race/ethnicity as part of the inpatient registration process.
    • Recognizing this gap is particularly important. We know far less about health care disparities in the outpatient setting as compared with the inpatient setting.

    Community Health Centers (CHCs)

    Perhaps because of the tremendous diversity of patients seen at CHCs and their mandate to have their boards of directors represent their communities, CHCs appear to be ahead of the curve in collecting information on patient's race and ethnicity.

    • The Bureau of Primary Health Care (BPHC) has demonstrated success in collecting data in this setting. BPHC's Universal Data System stores data from 700 grantees at 3,000 health care sites.
    • The BPHC has established specific racial, ethnic, and primary language data collecting and reporting requirements applicable to its network of CHCs.
    • The success of these programs provides evidence to other medical groups that this information can be routinely obtained from patients in outpatient practices.

    Health Plans

    In a 2005 study released by America's Health Insurance Plans (AHIP) and the Robert Wood Johnson Foundation, over half (53.5%) of 137 plans that were surveyed collect data that identifies the race or ethnicity of their enrollees.

    • 78.2% of Medicaid health plans collect race and ethnicity data.
    • 74.3% of Medicare plans collect race and ethnicity data.
    • 50.9% of commercial plans collect race and ethnicity data.

    Health plans report they collect such data to identify enrollees at risk for certain conditions, to support educational and other communication efforts directed to diverse populations, and to structure quality improvement efforts.

    Look to the blue Links column to the right for helpful resources.

    Standardization

    We recommend the following practices for standardizing race, ethnicity, and primary language data collection in health care organizations:

    Who provides the information
    Information should always be provided by patients or their caretakers. It should never be done by observation alone.

    When to collect
    Collection should take place upon admission or patient registration to ensure appropriate fields are completed when the patient begins treatment (for plans, at enrollment).

    What racial and ethnic categories should be used
    Start with the U.S. Census or the Office of Management and Budget (OMB) categories at a minimum. When possible, health care organizations are encouraged to provide more granular categories (to use for internal purposes), but these granular categories should have the capacity to be aggregated to the broader OMB categories for reporting purposes.

    Where should data be stored
    Data should be stored in a standard electronic format for easy linking to clinical data.

    Patient Concerns
    Concerns should be addressed up front and clearly, prior to obtaining information.

    Staff training
    Employers need to provide ongoing training and evaluation to staff.

    Benchmarking

    Benchmarking is necessary. Health care organizations need to know where they stand to see where they are going. For example, are quality improvement interventions making a difference? Should our organization be doing things differently?

    Collecting accurate data helps your organization track progress over time. In addition, it allows for comparisons within organizations, across organizations, as well as at a national level. Most national level data are obtained from health care organizations. If the data your organization collects are accurate, it contributes to accurate comparisons and reporting at all levels.

    Look to the blue Links column to the right for helpful resources.

     

     

     

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