Augmenting Research on South Asian and South Asian Women's Health in America: The Case for Data Disaggregation

South Asian Americans are a rapidly growing ethnic group in the United States. They experience an array of health disparities that are not well-understood or addressed partially due to a lack of research on the health of this population. There are many factors that contribute to this paucity of research, one is the lack of data disaggregation within the Asian demographic category in U.S. health research datasets. Data disaggregation allows a finding to be analyzed in more granular way. This may help uncover differences that were invisible in the aggregated data. In the context of this paper, data on Asians is often aggregated into one “Asian” category, so it cannot be broken down into East, South, etc. Asian, making the health differences of these populations challenging to identify. This paper provides a deeper understanding of the complex issues surrounding data disaggregation (scientific, technical, regulatory, and ethical), from the perspectives of thought-leaders and subject matter experts informed by their real-world experiences of conducting precision and biomedical research. In this study, participants concurred that data disaggregation is essential to understanding South Asian American health disparities and that aggregation can be harmful. They also noted barriers to and risks of disaggregation. These barriers and risks can start to be addressed with increased funding and researcher awareness of South Asian health disparities. Furthermore, informants highlighted methodological challenges, such as defining what it means to be South Asian and capturing culture in data. This is especially important for understanding the health of women in the community, as South Asians have gendered practices and health behaviors as a result of their cultural and religious beliefs. Participants agreed that country of origin is a good starting point for disaggregation, but more information, such as immigrant status, acculturation, and religion, is important to truly understand health and develop interventions. More research is needed to 3 understand perspectives of community partners, members of the South Asian American community, policymakers, and research funders on augmenting research on South Asian American health to address health disparities. Increased data disaggregation facilitated by greater funding and awareness among those conducting and participating in research is an important first step to improve the ability of researchers to identify the health needs or outcomes specific to the South Asian population in the United States.