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September 28, 2023

By Gary A. Puckrein, PhD

For Immediate Release:
September 28, 2023

Adjoa Kyerematen

Kelly Parsons

New Coalition Addresses Health Equity Challenges through Inclusive Data Collection

To improve health outcomes, groups join forces to standardize race, ethnicity, language, sexual orientation, and gender identity data collection


WASHINGTON – Today, the National Minority Quality Forum (NMQF), the Blue Cross Blue Shield Association (BCBSA), and 17 partner organizations announced the formation of the Data Equity Coalition, a new partnership to improve health outcomes through better, more accurate and more representative data on race, ethnicity and language (REL) and sexual orientation and gender identification (SOGI). Developing a standardized approach to this important data can be critical to ensuring everyone in America has an equal opportunity to attain their highest level of health.

Inequities exist throughout our health care system—and they must be addressed. Many racial, ethnic, socioeconomic and LGBTQIA+ communities are underserved and under-represented, and as a result, experience higher rates of diabetes, hypertension, obesity, asthma, heart disease, cancer, and preterm birth. The lack of comprehensive data to better understand these challenges as well as archaic standards for collecting it are contributing factors to the growing health equity gap.

“This coalition is an important step toward improving the health of millions of Americans,” said Kim Keck, BCBSA president and CEO. “People from underserved communities often face critical disparities in health care and data standardization will allow our country to target solutions to improve outcomes and ultimately create a better system of health, where equitable care is an expectation, not an exception.”

In 1977, the Office of Management and Budget (OMB) introduced Statistical Policy Directive No. 15 (SPD 15) that established a set of minimum standards for collecting race and ethnicity. OMB is initiating a formal review to revise SPD 15, which was last updated almost 30 years ago.

NMQF and BCBSA partnered to release an issue brief that outlines comprehensive solutions for OMB including clear requirements for REL and SOGI data collection and disaggregated race/ethnicity collection as well as non-voluntary, uniform adoption of the updated directive for all government agencies and private sector health care stakeholders.

The Data Equity Coalition will focus on the following:

●        Education on the importance of data as a critical pillar in advancing health equity.

●        Accelerating data advocacy to influence policy standards.

●        Effective data collection standards as a necessity to improve health outcomes.

The coalition will educate and engage OMB and policymakers to expand SPD 15 by further disaggregating the minimum standard collection categories and requiring non-voluntary, uniform, and universal adoption of the new SPD 15 by health care entities, including all government and private sector stakeholders. Additionally, the coalition will engage with the Department of Health and Human Services to elevate the implementation of the new SPD 15 standards and advocate for the creation of supplemental standards for SOGI data.

“Data is the lifeline of modern health care and after decades of collecting health data, NMQF is concerned about the limitations of available comprehensive standards for REL and SOGI data,” said Dr. Gary A. Puckrein, NMQF president and CEO. “The formation of the Data Equity Coalition marks a shared commitment to not only advancing health care equity but also enabling targeted solutions to better meet the needs of underserved groups. We are proud to co-lead this multi-stakeholder coalition of leaders to forge a healthier future for all communities.”

Members of the Data Equity Coalition include:

·         AAMC Center for Health Justice

·         Advocates for Community Health

·         Alliance for Women’s Health and Prevention

·         American Benefits Council

·         American Cancer Society Cancer Action Network

·         American Diabetes Association®

·         Asian & Pacific Islander Health Forum

·         Association of Black Cardiologists

·         Association of Black Health-system Pharmacists

·         Black Women’s Health Imperative

·         Blue Cross Blue Shield Association

·         Families USA

·         Mental Health America

·         Minority Health Institute, Inc

·         National Hispanic Medical Association

·         National LGBTQ Taskforce

·         National Minority Quality Forum

·         National Rural Health Association

·         Urban Institute


About The National Minority Quality Forum

National Minority Quality Forum assists healthcare providers, professionals, administrators, researchers, policymakers, and community and faith-based organizations in delivering appropriate healthcare to minority communities. This assistance is based on providing evidence in the form of science, research, and analysis that will lead to the effective organization and management of system resources to improve the quality and safety of health care for the entire population of the U.S., including minorities. For more information, please visit

About the Blue Cross Blue Shield Association

The Blue Cross and Blue Shield Association is a national federation of 34 independent, community-based and locally operated Blue Cross and Blue Shield companies that collectively provide health care coverage for one in three Americans.