Principles for Race, Ethnicity and Language Data Collection

These principles are put forth to establish a common framework for standardized race, ethnicity, and language (REL) data collection, for the purpose of identifying and reducing health disparities, and improving health, in the state of Minnesota.

Data should be self‐reported by the data subject (patient, program participant, etc.), to avoid the risk of misclassifying patients based on observations or assumptions of health care staff.

Health care workers may misclassify the race/ethnicity of people of color, particularly those of mixed race or ethnicity. To minimize misclassification, individuals should self‐identify their race/ethnicity. Individuals should be able to select more than one race/ethnicity category to identify their multi‐racial or multi‐ethnic status.

Allowing patients or program participants to select more than one race/ethnicity category, rather than choosing ‘multiracial,’ is necessary. When individuals have to select ‘multiracial’ rather than indicating specific racial/ethnic groups with which they identify, they feel that their identity is not captured, and the ability to understand inter‐group differences or similarities is lost.

The standard for REL data should be more granular than OMB standards, and include race/ethnicity/heritage categories that are relevant to Minnesota populations and based on self‐reported data.

Expanded race/ethnicity categories should be used by all providers and health care programs. In limited situations, if a program is prohibited by contract or regulation from making modifications to the OMB standards, OMB race/ethnicity categories can be used.

Expanded race/ethnicity categories must be able to be aggregated into existing OMB race/ethnicity categories.

Many programs and providers are required to submit reports to federal agencies that are based on OMB standards. Regardless of the expansiveness of any final Minnesota‐specific race/ethnicity/language standards, they must be able to be rolled up into OMB categories.

Expanded race/ethnicity categories should be regularly reviewed by a public/private collaborative that includes representatives from communities most affected by health disparities, to ensure that they are still relevant to changing Minnesota demographics.

Minnesota’s population continues to grow and change. This means that new communities and ethnic groups will need to be included in REL standards in the future that may currently be too small to include. Health care providers or health care program staff who will be collecting REL data must be appropriately trained on how to collect data in a way that is accurate and respectful.

Information and forms provided to patients must be simple and clear, and staff who are collecting information must be trained on how to collect this information and answer questions about its use. Providers/program staff should educate community members on why this information is being collected, and how it is being used.

2012 Recommendations to the Governor’s Health Care Reform Task Force

The REL Data Work Group respectfully asks the Governor’s Health Care Reform Task Force and its work groups to consider the following recommendations:

1) Health care organizations in Minnesota will collect data on race, ethnicity/tribal affiliation,and language, adhering to standards adopted by the State of Minnesota.

2) Standard data on racial, ethnic, and language characteristics are needed to identify and target health disparities; reporting, sharing, benchmarking, and using the data to improve health and reduce disparities is equally critical. The Minnesota Departments of Health and Human Services should continue to co‐convene a multi‐stakeholder work group with strong representation from communities most impacted by disparities. This group will identify principles and policy options to advance the reporting, sharing, benchmarking and use of data sets with standard versions of race, ethnicity, and language.

3) Future data collection might include socioeconomic status and acculturation. The Minnesota Departments of Health and Human Services should explore, research, and develop a long‐range plan for the inclusion of measures of socioeconomic status and acculturation in data collection efforts.

4) The State’s efforts to implement the collection of standard race, ethnicity, and language data elements should be undertaken in consultation with the Administrative Uniformity Committee, electronic health records vendors, and others to develop implementation methodologies necessary to provide uniform coding of such elements.

5) Minnesota’s efforts to address health care delivery, health care financing and payment, and patient outcomes should incorporate the collection, reporting, and use of race, ethnicity, and language data. These efforts include, but are not limited to health care homes, statewide quality reporting and measurement systems, provider peer grouping, accountable care organizations, and total cost of care contracting. Race, ethnicity, and language data should be incorporated into certification standards, reporting requirements, and statistical  methodologies. The State’s efforts will include a timeline to allow sufficient time for affected parties to integrate this data into their operations and systems.

6) The multi‐stakeholder work group will develop recommendations for the sharing of race, ethnicity, and language data with stakeholders. These stakeholders include but are not limited to tribal, local and state public health agencies, coalitions, advocacy groups, community‐based organizations, and researchers. Sharing of this data will enable the estimation of the incidence and prevalence of health conditions and related risk factors among racial and ethnic populations, and the use of this information to make progress toward the elimination of health disparities. Use and sharing of data will be consistent with state and federal regulations protecting the privacy of health information.

The Visibility Project

The Visibility Project is an initiative of the Alliance for Racial and Cultural Health Equity (ARCHé) and partners.  It is committed to promoting health equity and reducing health disparities by increasing the VISIBILITY of hidden and marginalized communities due to current health data practices. Visibility Project aims to change how health data is collected, reported and shared in Minnesota.

The National Institute of Health first defined “health disparities” as “the difference in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific populations.” In Minnesota, “specific populations” have only gone as deep as White, African American/African, Asian, American Indian, and Hispanic. However, just as Minnesota is no longer homogenous, neither are these five population categories.

Why should granular data be collected to reflect race, ethnicity, and primary language?

  • Aggregated data masks the diversity within unique populations, making it impossible to identify or accurately address the health problems of a unique population. 
  • Ethnic and cultural communities each have their own unique cultural practices, which impact both the understanding and treatment of poor health.
  • To aid in the planning for use of resources, disease management, preventive programs, and chronic disease programs for emerging populations.

Why should this information be standardized in the state of MN?

  • There is no standardization of race, ethnicity, or primary language data collection in the US, although numerous health organizations have called for it.
  • Standardization would support achieving the goal of the American Recovery and Reinvestment Act of 2009 (ARRA) to:  Have a national electronic health record (EHR) for each individual by 2014 that incorporates collection of data on the person’s race, ethnicity, and primary language.
  • Combining or comparing performance data by standardized race, ethnicity, and primary language across payment and delivery systems would enable better comparison and help illuminate the health care issues of population groups whose disparities may not be apparent because of small sample sizes at the local level.

Why should ungrouped information be made accessible to community-based organizations, as well as to medicine and education?

  • A comprehensive, multi-stakeholder strategy is needed to reduce racial and ethnic health disparities in health care, not singular efforts on the part of health systems. 
  • Communities and community leaders need the information to understand, quantify and monitor the health needs within their own group or community; enable them to create new or modify existing programs; and inform prioritization efforts. 
  • The capacity of ethnic community based organizations is limited because the majority of resources directed to health disparities go toward mainstream health care and education institutions.

Introdution and Values

ARCHé is an alliance of individuals and organizations committed to the elimination of racial, cultural and ethnic health disparities.  ARCHé was formed out of an intense and intentional listening campaign conducted by the Center for Cross-Cultural Health.  During this campaign CCCH met with 67 metro organizations, primarily ethnic, community based organizations to learn about the work they were doing to address health disparities, to understand the approach each organization used to create change and to develop a relationship with the organization’s leadership. 

In August 2009, CCCH convened a gathering of over 35 organizations to share what they had learned, to connect those present and to explore opportunities for collaboration.  One opportunity for collaboration stood out from all the rest – the need for health data to be ungrouped by race, ethnicity, or language rather than aggregated under the large OMB categories.  The participating organizations agreed to work together to address this issue and ultimately determined that it also needed to build an alliance that was sustainable beyond any one issue or opportunity.  

For the last several months a group of leaders have simultaneously been building ARCHé and leading a campaign to mandate the collection of race, ethnicity and language data in health care organizations. 

Hello world!

Welcome to ARCHe’s new website where you can learn more about the exciting work the Alliance for Racial and Cultural Health Equity is doing to build health equity in the Twin Cities, Minnesota, and the nation! We invite your comments and input.