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Tuesday, December 9, 2014

The Health Equity and Accountability Act: Improving Collection of Racial and Ethnic Data to Reduce Health Disparities

Asia Young

Health Equity Intern

Racial and ethnic minorities are more likely to suffer from disparities in health status and their access to quality health care. Health advocates have long argued that one key prerequisite to lessening these disparities (achieving health equity) is to quantify the problem through better data collection and analysis across the health care field. The Health Equity and Accountability Act (HEAA), which sets out a comprehensive and ambitious strategy to tackle health disparities, would also make big improvements to data collection. Introduced in the U.S. House by Representative Lucille Royball-Allard on behalf of the Tri-Caucus on July 30, 2014, the bill seeks to improve data collection practices in order to improve health disparity documentation, policy, and intervention efforts of policymakers, advocates, and providers. Addressing health disparities that afflict communities of color is critically important to the well-being of the nation.

You don’t count if you aren’t counted.  When health advocates are unable to quantify the nature and scope of the health disparity problem with accurate, robust data sets, stakeholders are forced into a world of anecdotes, assumptions, and guesstimates.

Collection of minority health data needs to be improved

While the Affordable Care Act did improve the standards for collecting data on minority health, there are still many ways these standards should be improved. The HEAA would fix two issues in particular.

Current minority health data collection practices don’t collect enough ethnic group-specific data 

The persistent problem around data collection is that race and ethnicity-related data have not been systematically included in government health surveys and programs. And often, if those data have been collected, they were deemed optional, which has undermined the integrity and scope of the minority health data that exists.

Compounding the problem is the fact that the data that are collected frequently are not segmented within racial and ethnic groups. This segmentation is needed to provide policymakers and providers with accurate insights into the health disparities—and their potential solutions—that are unique to distinct subgroups and communities.

In some cases, statistics for a broader minority group may seem comparable to the statistics for non-Hispanic whites, which can mask significant disparities within subgroups that require targeted interventions by researchers, providers, advocates, and policymakers.

The importance of collecting segmented subgroup data within broad ethnic and racial categories

Even when some race and ethnicity data are collected, these data are frequently not disaggregated or sufficiently granular. Instead, very different ethnic groups are often lumped together into one larger racial “group.” Without accurate, concrete information on different groups’ health, it’s not possible to document disparities, and tracking efforts to relieve those disparities is not possible. 

Take, for example, the “Asian American and Pacific Islander” category, which includes people in dozens of ethnic groups who speak many different languages. When compared to other racial and ethnic groups, this broad Asian American and Pacific Islander group often appears to be less affected by health disparities—and data for this group does not appear too different from the data for non-Hispanic whites. But a breakdown of the data by subgroups within the broader category reveals higher rates of health disparities

Examples: Cervical cancer and Vietnamese women; Puerto Ricans and asthma

The incidence of cervical cancer among Asian American women has been relatively low, at 6.4 per 100,000, which is lower than the rate for non-Hispanic white women (7.2 per 100,000). However, previous geographically targeted studies found that the incidence of this cancer among Vietnamese women (an Asian subgroup) is actually twice that of non-Hispanic white women. 

Similarly, while Hispanics overall have lower asthma rates than whites, the asthma rate for Puerto Ricans, a subgroup of Hispanics, is double the rate for whites.

Current data collection frequently overlooks other characteristics that can interfere with an individual’s access to health care

Factors other than racial and ethnic identity can affect a person’s access to high-quality health care and the quality of their health (health status). For instance, a person of color who is also gay or transgender (LGBTQ), or who has a disability, may experience additional barriers to care due to these crosscutting, overlapping identities and experiences (including facing stigma, lack of provider training, and discrimination, to name a few). Neglecting to collect these data leaves the health care community without key information necessary to address these disparities.

Failure to track data for any demographic makes the omitted individuals and communities—and their struggle to obtain high-quality, culturally-competent health care—invisible. 

Given a culture where “no data equals no problem,” this invisibility makes it impossible to develop effective, evidence-based policies and interventions for people in many different communities.

The Health Equity and Accountability Act improves on the Affordable Care Act

The Health Equity and Accountability Act is a comprehensive bill that would build on the Affordable Care Act’s advances in data collection for racial and ethnic minorities. 

The Affordable Care Act improved data collection primarily by requiring that all national population health surveys and programs collect data on race, ethnicity, sex, English Language proficiency, and disability status, but areas of concern remain.

The Health Equity and Accountability Act, a comprehensive, multi-pronged plan to tackle the health disparities that affect communities of color and other groups, includes necessary improvements to data collection. For example, among its improvements, government surveys and programs would have to: 

  • capture data about primary languages spoken other than English and Spanish, leading to more robust data sets about communities that may experience language barriers
  • oversample Asian American and Native Hawaiian or Pacific Islander populations in order to collect larger, more reliable data for these groups, which are often overlooked due to small sample size 
  • include sexual orientation and gender identity to better document and track the disparities faced by lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities 

The Health Equity and Accountability Act will provide decision-makers, advocates, and communities with access to better data and help ameliorate health disparities

Passing the HEAA would give decision-makers, advocates, and communities the data necessary to address health disparities afflicting communities of color. The bill, if passed, would help generate the robust and granular data needed to identify specific disparities, develop effective policies and interventions, and track progress.