Championing Partnerships for Data Equity

Good population health data are often taken for granted, and the people and organizations that gather it are often unsung heroes. For communities of color, immigrants, the LGBTQ population, and other special populations, such as the 50 ethnic and 100 language groups that make up Asian Americans (AAs) and Native Hawaiians and Pacific Islanders (NHPIs),¹ generating good population-representative data continues to be a major challenge. For AAs and NHPIs, characteristics of good population data are in-language administration and cultural adaptation of surveys, detailed collection of ethnic groups within the AA and NHPI aggregate categories, and adequate samples for reportable estimates, oversampling of smaller ethnic groups—elements that were non-existent 30 years ago. Nationally, AA and NHPI population health data today are products of the mettle, vigilance, and constant relay of data heroes representing many sectors and communities who have paved the way for all individuals to be recognized and counted. With that understanding, we seek to document the AA and NHP story beginning in 1985, with the hopes of inspiring and informing future data equity efforts.

In 1985, Secretary of Health and Human Services’ Margaret M. Heckler’s landmark report, Black and Minority Health,² considered AAs and NHPIs as one aggregate group. The report depicted an AA and NHPI population that lived longer, had lower infant mortality rates and had fewer excess deaths in several disease categories. This approach of aggregated statistics was troubling in two ways: First, the Asian Pacific Islander catchall category did not inform specific efforts needed to improve the health of distinct AA and NHPI cultural and linguistic groups. Second, the aggregated picture of good health was driven largely by AA and NHPI segments with more favorable health and economic well-being, perpetuating a model minority myth, and thus denying needed resources for vulnerable constituents of this group.

The release of the 1985 Secretary’s Report was a pivotal moment that could have led to two alternative paths—one of status quo, a world of complacence and acceptance of routine data collection on populations—or another path of awakening a social movement of AA and NHPI data advocates and heroes. If the first path was taken, then health disparities—including high uninsurance rates among Koreans, low cervical cancer screening among Vietnamese women despite higher rates of cervical cancer—would have been undetected. Thankfully, the second path was chosen and marked the beginnings of organized community data advocacy led by Tessie Guillermo, Laurin Mayeno, Sherry Hirota, Hardy Spoehr, Pat Luce, and other community champions calling for national voices to represent AAs and NHPIs and their health concerns (Figure 1). Two national health advocacy organizations, the Asian & Pacific Islander American Health Forum (APIAHF) and the Association of Asian Pacific Community Health Organizations (AAPCHO), were founded as a direct response to the Heckler Report to influence policy and to strengthen community-based organizations to achieve health equity for AAs and NHPIs across our nation.

Courting Partnerships for Early Wins

Data development became a top priority for these national health advocacy organizations in their work to improve and assure the health of all AAs and NHPIs. Early on, community and public sector engagement was critical to the data development agenda. From the community, key leadership was provided by APIAHF’s Executive Director, Tessie Guillermo, AAPCHO’s Executive Director, Laurin Mayeno, and APIAHF’s board members, namely Dr. Harry Lee, Dr. Rolland Lowe, Ms. Sherry Hirota, Dr. Christopher Jenkins, and Dr. Herbert Hatanaka, each also representing community health providers and health delivery systems. Key federal partners included Dr. Samuel Lin (former Assistant U.S. Surgeon General and Deputy Assistant Secretary for Health, Department of Health and Human Services), Betty Lee Hawks (formerly with the Federal Office of Minority Health), and Dr. Jane Lin-Fu (formerly with Health Resources and Services Administration).

In 1989, the APIAHF established the National Research Advisory Committee (NRAC). The NRAC greatly benefited from the advice, and later, active participation from...