Making the Case for Data Disaggregation to Advance a Culture of Health

Racial and ethnic health disparities and inequities can only be eliminated if there is high-quality information by which to track immediate problems and underlying social determinants, as well as to guide the design and application of culturally specific medical and public health approaches. Often, health outcomes are disaggregated by broad racial categories such as "Black or African American," "Hispanic or Latino," "Asian and Pacific Islander," "White," or "Native American." However, the vast diversity of the U.S. population means that people's actual experience is much more specific.

There are many compelling reasons to build and maintain a much more robust practice of disaggregating data below the level of major racial groups and linking that data to the factors that influence health. Our project was designed to bring together the people and organizations who have the most knowledge and have worked most extensively to bring about better data disaggregation, and to set an agenda for policies and practices to bring about positive changes.

This project was initiated and supported by the Robert Wood Johnson Foundation as part of a series of grants to explore the state of the field of racial and ethnic data disaggregation to advance a Culture of Health and to develop recommendations for action. In addition to the support for the activities of Policylink, RWJF commissioned six reviews by leading experts of the literature and data sources about each major racial group in the United States as well as a comparative international scan. After holding two sessions with those research reviewers, PolicyLink organized three larger convenings, held in 2017, at which we explored how disaggregation of data in greater detail than major race and ethnic categories can advance a culture of health. The convenings were developed to create spaces in which broader, action-oriented dialogues could move the field. The convenings informed the final report for the project, which summarizes the evidence about the importance of better disaggregated data and outlines a pathway toward successful changes in critical public policies and institutional practices. 

This project began in 2015, in a period of expansion of numerous strategies for equity in health access and in the creation of healthier communities, many of them being implemented or supported by the federal government. It was also a period of innovation and exploration for the U.S. Bureau of the Census and other federal agencies, and many of their state counterparts with respect to improving the ways to measure race and ethnicity. The past year has seen a very different environment for nearly every dimension of this exploration. The future of many federal health equity initiatives is in question, the 2020 Census has been underfunded, and a climate more unfriendly to immigrants has created fear in the security of data collection. Although the environment has changed, the underlying trends remain and the need for a well-conceived map of actionable steps for achieving health equity is as great as ever.

Final Report

Counting a Diverse Nation: Disaggregating Data on Race and Ethnicity to Advance a Culture of Health

This report tracks all the trends and organizes all the resources and ideas that were raised throughout the project to convey a detailed picture of the field of data disaggregation and where it needs to move. The experiences of various racial and ethnic groups, while distinct, translate into a common agenda for improvements of research practice and changes in policy.

The report recommends 13 changes and improvements in two key focus areas:

  • The conduct of research and data collection
  • the government and corporate policies that define priorities and allocate resources

There are recommendations for the networks of demographers, sociologists, and public health researchers who create, manage, and analyze survey and administrative data. Other recommendations provide next steps for the federal agencies, including the U.S. Census Bureau, that manage surveys, set standards for data collection, and fund health research. The recent experience of several state governments that have pioneered greater disaggregation are also described.

Convenings of Diverse Leaders

The convenings brought together close to 100 policy advocates, researchers in both universities and community-based organizations, managers of health surveys, federal officials from at least four departments, and representatives of philanthropy. Participants addressed policy issues from multiple perspectives, listened to advocates and on-the-ground organizers describe their campaigns, explored the boundaries of theoretical and practical health equity issues, and learned about how race and ethnicity resonated differently across communities.

The convenings helped answer key overarching questions such as:

  • What are the health equity questions and issues that could be addressed with better data disaggregation below the level of broad racial categories?
  • Where are important sources of information and models of good practice?
  • Where are the major gaps in, and structural limitations of, the current sources?
  • What would better data, and more productive data systems, look like, with respect to disaggregation below the level of broad racial categories?
  • Given these urgent needs, gaps, and possibilities, what are actionable policies and strategies to move the field toward improved data collection, analysis, and access? 
  • How can various governmental, philanthropic, health, and research institutions, scholars, advocates, and policymakers take up these actions in the current environment?

The agendas for each convening and presentation slides from many of the speakers are available through the links below.

Making the Case for Data Disaggregation

Held at the UCLA Luskin Center, Los Angeles, May 24 & 25, 2017

Download agenda: Understanding the Health of Racially and Ethnically Diverse Populations


Multiple Racial Identities and What They Mean for Health: Clarifying Issues and Raising the Visibility of Populations

Held at the Emory University Conference Center, Atlanta, June 8 & 9, 2017

Download agenda: Multiple Racial Identities and What They Mean for Health


The Role of Data Disaggregation in Understanding the Health of Immigrants and Migrants of Diverse Backgrounds

Held at The Leadership Conference on Civil and Human Rights, Washington, DC, June 28 & 29, 2017

Download agenda: Understanding the Health of Immigrants and Migrants of Diverse Backgrounds


Research Reviews on Data Disaggregation

The project has been informed by research on the following topics undertaken by six teams, and by dialogues among these contributors in preparation for the convenings in 2017. The literature reviews were supplemented by key informant interviews, legislative timelines, and theoretical frameworks. All the reviews concluded with recommendations for the field to improve the quality of disaggregated data and its use for achieving health equity.

Each of these reviews can be accessed through the links in the report titles that follow. The principal investigators are listed first, followed by the coauthors and contributors. In most instances there is also a link following the principal investigator's name to a slide presentation that team members provided at project meetings to describe the state of practice and the prospects for improvement.

Disaggregating American Indian & Alaska Native Data

  • Malia Villegas (Download presentation)
    Former Director, National Congress of American Indians Policy Research Center
  • Amber Ebarb, National Congress of American Indians 
    Program Manager, NCAI Policy Research Center
  • Sarah Pytalski, National Congress of American Indians
    Former Policy Research & Evaluation Manager, NCAI Policy Research Center
  • Yvette Roubideaux, National Congress of American Indians 
    Director, NCAI Policy Research Center

Understanding the Culture of Health for Asian American, Native Hawaiian and Pacific Islanders (AANHPIs)

  • Ninez Ponce, University of California, Los Angeles (Download presentation)
    Professor of Public Health
    Principal Investigator, California Health Interview Survey
  • AJ Scheitler, University of California, Los Angeles
    Coordinator of Stakeholder Relations, Center for Health Policy Research
    Coordinator, National Network of State and Local Health Surveys
  • Riti Shimkhada, University of California, Los Angeles 
    Public Administration Analyst, Center for Health Policy Research

Disaggregating Latino Surveillance Health Data Across the Lifecourse

  • Carmela Alcántara, Columbia University (Download presentation)
    Assistant Professor of Social Work
    Faculty Affiliate, Social Intervention Group
  • Leopoldo Cabassa, Washington University in St. Louis
    Associate Professor of Social Work
  • Shakira Suglia, Emory University
    Associate Professor of Epidemiology
  • Irene Perez Ibarra, Columbia University
    Associate Research Scientist, School of Social Work
  • A. Louise Falzon, Columbia University
    Information Specialist, Center for Behavioral and Cardiovascular Health
  • Elliot McCullough, Columbia University
    Joint MSW and MPH Student, School of Social Work and Mailman School of Public Health
  • Talhah Alvi, Columbia University
    MS Student, Teacher's College

Challenges and Prospects for Disaggregating Health Data among Whites

Disaggregating the Black Population & Ameliorating Health Inequities

  • James S. Jackson, University of Michigan (Download presentation)
    Director of the Institute for Social Research
    Daniel Katz Distinguished University Professor of Psychology
  • Tod G. Hamilton, Princeton University 
    Assistant Professor of Sociology
    Faculty Associate of the Office of Population Research
  • Mosi A. Ifatunji, University of North Carolina, Chapel Hill
    Assistant Professor of Sociology
    Carolina Population Center
  • Krim K. Lacey, University of Michigan-Dearborn
    Assistance Professor of Sociology and African and African American Studies
  • Hedwig E. Lee, University of Washington 
    Associate Professor of Sociology
  • Jane A. Rafferty, University of Michigan 
    Research Area Specialist Senior, Institute for Social Research

Heterogeneity/Granularity in Ethnicity Classifications (HGEC) Outside the U.S.

  • Raj Bhopal, University of Edinburgh, Principal Investigator
    Bruce and John Usher Professor of Public Health and Honorary Consultant in Public Health Medicine
  • Emma Davidson, University of Edinburgh
    Co-Principal Investigator
    Research Fellow
  • Nazmy Villarroel-Williams, University of Edinburgh
    Research Fellow
  • Pamela Perayra-Zamora, University of Alicante
    Assistant Professor of Community Health and History of Science
  • Allan Krasnik, University of Copenhagen
    Professor of Public Health
    Investigator, Denmark
  • Dr. Peter Aspinall
    Investigator, United Kingdom
  • Dr. Liv Stubbe
    Investigator, Denmark
  • Dr. Inez Koller
    Investigator, Hungary
  • Dr. Donna Cormack
    Investigator, New Zealand
  • Dr. Tahu Kukutai
    Investigator, New Zealand
  • Professor Hude Quan
    Investigator, Canada
  • Dr. Kelsey Lucyk
    Investigator, Canada
  • Dr. Karen Tang
    Investigator, Canada
  • Dr. Shyamala Nagaraj
    Investigator, Malaysia
  • Dr. Chiu Wan Ng
    Investigator, Malaysia