The Details on National Data Disaggregation from NMCDC

Friday, October 24, 2023; Washington D.C.: Members of the Center for Health Innovation’s New Mexico Community Data Collaborative (NMCDC) team attended the 2023 Disaggregation Nation! summit in Washington D.C. on Oct. 24, hosted by the Leadership Conference Education Fund, our funders in the Data Disaggregation work (more information on this to be released in Jan. 2024).

At this summit, the NMCDC team was pleased to meet face-to-face with other grantees from across the U.S. who are working on various stages of passing or implementing legislation in their communities to increase the availability of disaggregate data. We heard from expert panelists in data disaggregation and were even provided a tool kit to support messaging and implementation for data disaggregation. New Mexico is one of 13 states to have disaggregation legislation on the books! These include House Bill 18 – Health Information Systems Act and NMAC 7.1.27.

A key takeaway from this convening is that if you don’t collect it, you will never have enough information to report on it. For example, we know that New Mexico has many extremely small populations living in rural areas, whose numbers get even smaller when broken apart by demographic groupings. However, if this is used as an excuse to never collect data about a population because they are ‘too small,’ the responsibility of change is placed on the group and not on the system to find solutions to understanding and proving discrimination and disparity of and within populations.

At the summit, we had the pleasure of hearing from Dr. Jenny Yang, Deputy Director of the Domestic Policy Council for Racial Justice & Equity for the Biden administration, who spoke to using data as a key tool to demonstrating discrimination, intent, and harm, and to dismantle it. Dr. Yang also shared the following resources and information about work undertaken in the current administration, which we have described and provided links to below.

The U.S. Office of Management and Budget (OMB) Statistical Policy Directive (SPD) 15, launched in 1977, is the current federal minimum standard for race and ethnicity data collection, and this is being revised. Some key revisions expected to come from this include:

• the addition of the ‘Middle Eastern or North African’ category,
• the elimination of the distinction between race and ethnicity, effectively making Hispanic or Latino a race category, and
• the inclusion of detailed race and ethnicity categories on questionnaires so individuals may specify their identities more easily, and so that greater disaggregation within race categories may be better understood.

The period for open comments and listening sessions is now closed.

• Data.gov is a searchable catalog of data created to make available underused data sets.
• The 13 federal statistical agencies are partnering to serve the nation more equitably with data, and many of these agencies are actively hiring for positions in innovation.
• The U.S. Center for Disease Control and Prevention (CDC)/Agency for Toxic Substances and Disease Registry (ATSDR) has launched the Environmental Justice Index to greater assess the environmental burden across the nation.
• The U.S. Department of Health and Human Services (HHS) will begin to report broader disaggregate information regarding the Asian and Pacific Islander (API) communities.
• The federal Bureau of Labor and Statistics (BLS) has been providing county-level monthly labor statistics on unemployment. Explore this trend data in your New Mexico county using the How did the unemployment rate change since last month? dashboard on the NMCDC website.
• The U.S. Department of Veterans Affairs (VA) has augmented the PACT Act Performance Dashboard published every other Friday to include gender, race, ethnicity, and age.
• The Criminal Justice Statistics Interagency Working Group of the National Science and Technology Council has published the Equity and Law Enforcement Data Collection, Use, and Transparency report which includes guidance on collecting data to track and expose racial profiling in policing.
• Federal agencies are undergoing efforts to increase the collection of quality of Sex and Gender Identity (SOGI), including the release of the Recommendations from the Equitable Data Working Group report in Jan of 2021. Additionally, all federal agencies are required to create a plan that ensures that SOGI data is counted and usable.
• The U.S. Census Bureau’s American Community Survey (ACS) received a Fiscal Year (FY) 2023 appropriation of ten million dollars to research the addition of SOGI questions to the questionnaire.  
• As of 2021, the U.S. Census Bureau’s Household Pulse Survey (HPS) asks three SOGI questions and has demonstrated that SOGI households faced higher economic burdens and food insecurity during the pandemic than non-SOGI households. The HPS asks the following:
  • What sex were you assigned at birth on your original birth certificate?
    • MaleFemale
    Do you currently describe yourself as male, female, or transgender?
    • MaleFemaleTransgenderNone of these
  • Which of the following best represents how you think of yourself?
    • Gay or Lesbian
    • Straight, that is not gay or lesbian
    • Bisexual
    • Something else
    • I don’t know