The Purpose of this Project
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, Latino, Asian, White or Native American. However, the vast diversity of the American population means that people’s actual experience is much more specific.
Through several reviews of the literature by leading experts in 2016 and a set of three convenings in 2017, we aim to further explore how disaggregation of data by race and ethnicity beyond major race and ethnic categories can advance a culture of health. The convenings have been developed to create spaces in which broader, action-oriented dialogues can move the field. The participants in the convenings will be contributors to the emerging strategies and encouraged to become active in the ongoing efforts. The convenings will be followed by a final report for the project which will summarize the evidence about the importance of better disaggregated data and outline a pathway toward successful changes in critical public policies and institutional practices.
The convenings will help to 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 policy-makers take up these actions in the current environment?
The writing of these papers was supported by grants from The Robert Wood Johnson Foundation to the authors’ universities or organizations. These are working drafts for participants in the convenings about data disaggregation and should not be circulated. 0pixels Flexible Project Resources The following working documents are for the project network’s internal review. We intend for these documents to help the PolicyLink team refine, analyze, and synthesize the recommendations for the final report. Please do not distribute these documents beyond the project network.
- 10/9/17 Webinar Recording
- 10/9/17 Webinar Slides
- Survey of Recommendations
- Key Focus Areas for Data Disaggregation to Advance a Culture of Health
- Appendix of All Recommendations from the Convenings
UCLA Luskin Center, Los Angeles, May 24 & 25, 2017
Making the Case for Data Disaggregation
Download agenda: Understanding the Health of Racially and Ethnically Diverse Populations
Presentations:
- Tina Kauh, Advancing a Culture of Health (Download presentation)
- Nicholas Jones, 2015 National Content Test Race/Ethnicity Research: Collecting Detailed Responses (Download presentation)
- Iyanrick John, Understanding and Addressing the Barriers to Data Disaggregation (Download presentation)
- AJ Scheitler, Barriers to Race/Ethnicity Data Disaggregation: the Perspective of State Health Surveys (Download presentation)
- Richard Calvin Chang, Action Framework for Moving Data Disaggregation Efforts (Download presentation)
Emory Conference Center, Atlanta, June 8 & 9, 2017
Multiple Racial Identities and What They Mean for Health: Clarifying Issues and Raising the Visibility of Populations
Download agenda: Multiple Racial Identities and What They Mean for Health
Presentations:
- Tina Kauh, Advancing a Culture of Health (Download presentation)
- Nicholas Jones, Collecting and Analyzing Data for the Multiracial Population in the United States: Research by the U.S. Census Bureau (Download presentation)
- Meghan Woo, Measuring the Multiracial Population for Health Research (Download presentation)
- Mary Campbell, Multiracial Health (Download presentation)
- Amber Ebarb, Beyond the Asterisk: Disaggregating Data for Tribal Nations (Download presentation)
- Michele Suina, Realizing Indigenous Data Sovereignty: The Role Of Tribal Serving Organizations (Download presentation)
- Abigail Echo-Hawk, American Indians/Alaska Natives as Small Populations (Download presentation)
- Trina Jones, Colorism (Download presentation)
- Ellis Monk, Skin Color And Health: Rationale And Measurement (Download presentation)
- Getting Equity Advocacy Results (GEAR): Identifying and tracking the essential components of equity advocacy for policy change (Download presentation)
Videos:
- Pew Research Center, Multiracial Voices: http://www.pewresearch.org/multiracial-voices/
- Define: BLACK, Growing Up Afro-Latino: https://www.youtube.com/watch?v=oWT9c2WI2Qg
- The New York Times, A Conversation With Latinos on Race: https://www.youtube.com/watch?v=tLLCHbCgJbM
The Leadership Conference on Civil and Human Rights, Washington, DC, June 28 & 29, 2017
The Role of Data Disaggregation in Understanding the Health of Immigrants and Migrants of Diverse Backgrounds
Download agenda: Understanding the Health of Immigrants and Migrants of Diverse Backgrounds
Presentations:
- Tina Kauh, Advancing a Culture of Health (Download presentation)
- Adrian Dominguez, United States Indigenous Data Sovereignty Network (Download presentation)
- Audrey Singer, Data on Immigrants and Immigrant Integration (Download presentation)
- Minh Wendt, Data Disaggregation to Inform Health Policy (Download presentation)
- Rashida Dorsey, Acculturation Measures in HHS Data Collections (Download presentation)
- Bev Pratt, Federal Interagency Working Group for Research on Race and Ethnicity (Download presentation)
- Rachel Marks, Updated Timeline for 2020 Census (Download presentation)
- Yousef Turshani, Healthcare for All: South L.A. (Download presentation)
- Carmela Alcántara, Unpacking Acculturation and Migration Health Data (Download presentation)
- Dolores Acevedo-Garcia, Why Disaggregate Data on U.S. Children by Immigrant Status? (Download presentation)
- Randy Capps, Estimating the Characteristics of Unauthorized Immigrants Using US Census Data (Download presentation)
- Erica Phillips, The Role of Data Disaggregation in Understanding the Health of Immigrants and Migrants of Diverse Backgrounds (Download presentation)
Podcast:
- WNYC On the Media, Stand And Be Counted: http://www.wnyc.org/story/on-the-media-2017-06-23/
The project has been informed by research on the following topics undertaken by six teams, and by dialogues among the contributors in preparation for the convenings in 2017. The topic titles link to the draft literature reviews. The presentations link to the slides presented at the convenings, to describe the state of current 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
- 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, Columbia University
Associate Professor of Social Work
Assistant Director of the New York State Center for Excellence for Cultural Competence - 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
- Jen'nan Read, Duke University (Download presentation)
Associate Professor of Sociology and Global Health
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
Program for Research on Black Americans, Institute for Social Research - 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 (Download presentation)
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