New issue briefs from the Data Equity
Coalition give recommendations to standardize data collection
methods to improve health outcomes in historically underserved
communities
CHICAGO, April 29,
2024 /PRNewswire/ -- To reduce inequities in the
U.S. health system, the Data Equity Coalition is calling for
standardized data collection methods around race, ethnicity,
language (REL), sexual orientation, gender identity (SOGI) and
disability status through a new series of issue briefs.
"Data standardization is crucial to advancing health equity and
creating a better system of health—one centered on trust," said
Blue Cross Blue Shield Association President and CEO, Kim Keck. "Data is more than just numbers—data
represents real people. When every part of the health care system
collects the same inclusive information, we can work together to
ensure people get the care that they need."
Significant inequities plague the U.S. health care system
and disproportionately impact historically marginalized racial,
ethnic, socioeconomic and LGBTQ+ communities. As a result, these
underserved and under-represented communities experience birth
complications at higher rates, face greater barriers to accessing
mental health care and are more likely to die from treatable and
preventable conditions. Without clear data standards, these equity
gaps will persist.
"NMQF's mission is to reduce patient risk by assuring optimal
care for all," said National Minority Quality Forum President and
CEO, Gary Puckrein, Ph.D. "Our
vision is an American health services research, delivery, and
financing system whose operating principle is to reduce patient
risk for amenable morbidity and mortality while improving quality
of life. Within that context, partnering with BCBSA and other
engaged organizations on data equity has been, and continues to be
logical and essential."
For the first time since 1997, the Office of Management and
Budget published revised federal standards for maintaining,
collecting and presenting federal data on race and ethnicity, but
more progress is needed to better reflect the changing demographics
of the U.S. population.
Among other recommendations to advance true data equity, the
Data Equity Coalition calls for:
- Ensuring gender identity measures allow non-cisgender people to
properly reflect their identities in responses
- Disaggregating race and ethnicity data to the maximum extent
possible
- Ensuring REL and SOGI indicators are captured and routinely
monitored for maternal health outcomes
- The implementation of robust cybersecurity standards to ensure
the data collected is safe from technological breaches and
hacks
Leaders from the organizations authoring the white papers said
the following:
Eduardo Sanchez, M.D., M.P.H.,
FAAFP., Chief Medical Officer for Prevention, American Heart
Association
"If we can see it, we can address it. Data
disaggregation allows us to detect differences, if they exist,
between and within populations, and to design policies and programs
that can help eliminate health disparities and achieve health
equity."
Linda Goler Blount, M.P.H.,
President, Black Women's Health Imperative
"Working within a
data equity approach means that we must not only collect data but
use data to learn how to make the necessary changes in health
systems to keep Black women healthy in maternal care."
Indivar Dutta-Gupta, President & Executive Director, The
Center for Law and Social Policy
"As an organization focused
on eliminating poverty, policymakers need robust data to address
economic insecurity and advance health equity and data far too
often neglects the very communities with the most distinct needs
and who are ill-served by our current systems."
Schroeder Stribling, President
& CEO, Mental Health America
"We must ensure that our
data collection standards reflect the country's changing
demographics. More equitable data is key to addressing the health
care system's persistent inequities—especially as it relates to
mental health care access for members of underserved
communities."
Kierra Johnson, Executive
Director, National LGBTQ Task Force
"The National LGBTQ Task
Force urges the expansion and improvement of sexual orientation,
gender identity and sex characteristics data collection to improve
health equity. We implore the
administration, Congress, and government
agencies to allocate resources that meet the needs
of LGBTQ individuals."
For more information, please find the complete set of issue
briefs here.
Blue Cross Blue Shield Association
The Blue Cross
and Blue Shield Association is a national federation of
independent, community-based and locally operated Blue Cross and
Blue Shield companies that collectively provide health care
coverage for one in three Americans.
About the National Minority Quality Forum
Founded
in 1998, National Minority Quality Forum (NMQF) is a United States-based, health care research,
education and advocacy organization whose mission is to reduce
patient risk and advance health equity. NMQF utilizes data and
research to support and mobilize healthcare organizations, leaders,
policymakers, and patients in advocating for optimal care for every
individual, especially those in minoritized communities. For more
information, please visit http://www.nmqf.org.
American Heart Association
The American Heart
Association is a relentless force for a world of longer, healthier
lives. We are dedicated to ensuring equitable health in all
communities. Through collaboration with numerous organizations, and
powered by millions of volunteers, we fund innovative research,
advocate for the public's health and share lifesaving resources.
The Dallas-based organization has
been a leading source of health information for a century. During
2024 - our Centennial year - we celebrate our rich 100-year history
and accomplishments. As we forge ahead into our second century of
bold discovery and impact our vision is to advance health and hope
for everyone, everywhere. Connect with us
on heart.org, Facebook, X or
by calling 1-800-AHA-USA1.
Black Women's Health Imperative
The Black Women's
Health Imperative is a national non-profit organization dedicated
to advancing the health and well-being of Black women and girls.
With a 40-year history of groundbreaking advocacy and research,
BWHI remains committed to addressing the unique health challenges
faced by Black women and ensuring their voices are heard in
healthcare policy and practice.
Center for Law and Social
Policy
The Center for Law and Social Policy
(CLASP) is a national, nonpartisan, anti-poverty organization
advancing policy solutions for people with low incomes, with a
focus on addressing systemic racism as the primary cause of
poverty for communities of color.
Mental Health America
Mental Health America is the
nation's leading community-driven nonprofit dedicated to promoting
mental health and well-being, resilience, recovery, and closing the
mental health equity gap. Mental Health America's work is driven by
its commitment to promote mental health as a critical part of whole
person health, including prevention services for all; early
identification and intervention for those at risk; and integrated
care, services and supports for those who need them. Learn more at
MHAnational.org.
National LGBTQ Task Force
The National LGBTQ
Task Force advances full freedom, justice, and equality for
LGBTQ people. We are building a future where everyone can be free
to be their entire selves in every aspect of their lives. Today,
despite all the progress we have made to end discrimination,
millions of LGBTQ people face barriers in every aspect of their
lives: in housing, employment, healthcare, retirement, and basic
human rights. Those barriers must go.
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SOURCE Data Equity Coalition