NEW YORK (November 13, 2023) — The Center for the Study of Asian American Health (CSAAH) at NYU Langone Health and Coalition of Asian American Children and Families (CACF) are pleased to announce the release of a new Manual on Collection, Analysis, and Reporting Of Asian American Health Data and a series of Race/Ethnicity Data Disaggregation Toolkits focused on improving data collection on Asian Americans throughout New York State.

Led by CSAAH, these resources were developed under the Innovations in Data Equity For All Laboratory (IDEAL) initiative, a cross-sector and interdisciplinary collaborative with the goal to transform health data collection in New York state through equitable collection of patient race/ethnicity and strengthening patient and community trust in in health care settings. Collaboratively developed by CSAAH and CACF, both the manual and the toolkits were designed to support individuals and teams working with health data pertaining to Asian American populations and the implementation of data disaggregation practices, or implementation of race/ethnicity questions with expanded categories. Development of the tools was informed by findings from a series of community focus groups conducted by the New York Academy of Medicine (NYAM), an IDEAL partner, to gather community perspectives and preferences related to race and ethnicity data collection in health care settings. A separate report on these findings is available on the NYAM website at bit.ly/NYAMCommunityFocusGroups.

The Manual on Collection, Analysis, and Reporting Of Asian American Health Data provides recommendations and best practices for collecting, analyzing, and reporting Asian American health data. The manual is intended for researchers, analysts, and practitioners as a user guide to walk through research processes from data collection to reporting of health data involving Asian American populations. This manual may also be useful for community-based organizations who are engaged and advise on research practices involving racialized communities. The manual is a detailed guide on community-engaged research and data analyses for Asian American communities but may be applicable to other small and emerging populations that are often invisible in data. The full manual is available at: bit.ly/DataDisaggregationManual.

"Our collective efforts show that it is possible to engage community members in a meaningful way to inform and improve the disaggregated data we collect,” says Stella Yi, Associate Professor in the Department of Population Health, Section for Health Equity at NYU Grossman School of Medicine. “We applaud New York State for their leadership towards improved disaggregated data collection, which will make the Asian American and Native Hawaiian/Pacific Islander communities visible and represented in local and state data, and hope that there is continued investment and conversations with our community to inform successful implementation." 

“Clear, disaggregated data is a key building block to the creation of strong public health policies that truly serve our diverse AAPI communities. This new guide will help health care administrators, data managers, and researchers collect key health data on the populations they serve,” says Anita Gundanna and Vanessa Leung, Co-Executive Directors of the Coalition for Asian American Children and Families (CACF). “CACF is particularly grateful for the work of the NYS Department of Health’s Office of Health Equity and Human Rights for their support in the creation of this guide. CACF and our Invisible No More campaign look forward to continuing these collaborations as we work on the critical next step of ensuring these tools are being used by New York State agencies to promote stronger data collection on communities of color throughout the State.”

The second resource is the Race/Ethnicity Data Disaggregation Toolkits for health providers and executives, community-based organizations and advocates, and data managers and analysts. The toolkits include a guide with information and talking points to  and promote accurate and inclusive data collection and reporting practices;  customizable training PowerPoint presentations on data disaggregation and data equity for the three audiences above   and seven  community guides on how race/ethnicity have historically been collected and reported for seven racial/ethnic identities, , including American Indian/Alaska Native, Asian, Black or African American, Hispanic/Latino, Middle Eastern/North African, Native Hawaiian/Pacific Islander, White, and Multiracial populations. The toolkits are available at: https://bit.ly/DataToolKits.

CACF and its Invisible No More campaign played an integral role in the passage and signing of New York State’s landmark data disaggregation bill, which was signed into law by Governor Kathy Hochul in December 2021. Resources like the new Data Disaggregation Manual and Toolkits will help hospitals, researchers, and agencies best collect this vital data.

"The passage of this bill was historic and will improve the lives of Asian American and Native Hawaiian/Pacific Islander New Yorkers,” says Lan Doan, Assistant Professor in the Department of Population Health, Section for Health Equity at NYU Grossman School of Medicine. “Disaggregated data collection will allow us to better identify the needs and improve services for community members, and is a critical first step towards informed policy-making and more accurate resource and funding allocations." 

“The data disaggregation manual and toolkits provide a blueprint for improving data quality and accurate representation of the diversity of New York," says Simona Kwon, Associate Professor in the Department of Population Health and Director of the Section for Health Equity at NYU Grossman School of Medicine. “This is an example of our successful decades-long advocacy for inclusive representation of our Asian American and Native Hawaiian/Pacific Islander communities. This is an important opportunity for New York State to be at the forefront of leading transformational change in data collection systems, to meaningfully advance health equity for our communities.”

About CSAAH and CACF:

Coalition for Asian American Children and Families (CACF) is the nation’s only pan-Asian children and families’ advocacy organization bringing together community-based organizations as well as youth and community allies to fight for equity for Asian Americans and Pacific Islanders (AAPIs). CACF’s mission is to advocate for equity and opportunity for marginalized AAPI children and families.

The Center for the Study of Asian American Health (CSAAH) at NYU Langone Health is a National Institutes of Health (NIH) National Institute on Minority Health and Health Disparities (NIMHD)-funded Specialized Center of Excellence based in the Section for Health Equity within NYU Grossman School of Medicine’s Department of Population Health. Established in 2003, CSAAH is the only center of its kind in the country that is dedicated to cross-cultural health research and partnerships with Asian and Native Hawaiian and Pacific Islander (NH/PI)-serving groups. In close collaboration with over 75 local and national community partners, we have evolved our mission and goals to advance health disparities research guided by a population health equity framework.

Media Contact:

For more information or to connect with a member of the CSAAH or CACF team that helped develop these resources please contact CSAAH’s Stella Yi at Stella.Yi@nyulangone.org or CACF’s Lakshmi Gandhi at lgandhi@cacf.org.