Federally supported project's new Framework
provides examples and counsel on improving collection and curation
of race and ethnicity data in health care research
WASHINGTON,
Aug. 5,
2024 /PRNewswire/ -- The Reagan-Udall Foundation for
the FDA (the Foundation) launched a new tool for leaders in health
care delivery—the RAISE Action Framework. Developed through the
Real-world Accelerator to Improve the
Standard of collection and curation of race and
Ethnicity (RAISE) project, this new Framework will
facilitate action toward improving the collection, curation, and
exchange of race and ethnicity data in health care settings.
Available on the Foundation website, the RAISE Action Framework
includes priorities such as incentivizing race and ethnicity data
collection, standardizing data collection methods, aggregating data
collected locally, and training the health care workforce on best
practices. Real-world examples in the Framework guide organizations
in implementing effective community-centered strategies tailored to
meet each health priority.
"The RAISE Action Framework is a roadmap for health care
organizations to improve how they engage with communities to
collect data that supports community needs for more equitable care
and research. The Action Framework offers successful examples that
organizations can use to build an infrastructure to support the
collection, curation, and exchange of race and ethnicity data that
is grounded in cultural humility," said Carla Rodriguez-Watson, PhD, MPH, Director of
Research at the Foundation and the Principal Investigator of RAISE.
"It is a tool designed to meet the urgent need to address gaps in
race and ethnicity data and to support health care organizations to
enter the Framework at the point that most aligns with their unique
needs."
Key strategies to support the RAISE priorities:
- Address the need for cultural humility in health care
- Address distrust and misalignment between question and
answer
- Address resource limitations
- Improve the exchangeability of race and ethnicity
information
- Improve representativeness without overwhelming respondents and
existing information architecture
RAISE aims to address the critical issue of incomplete and
inconsistent collection of race and ethnicity data, which is vital
for improving care and addressing health equity gaps. Through
stakeholder meetings and the creation of this multi-dimensional
Action Framework, the initiative, in collaboration with the Food
and Drug Administration's Office of Minority Health and Health
Equity (OMHHE), focuses on understanding, aligning, and
disseminating best practices to improve real-world reporting,
collection, curation, and integration of race and ethnicity
data.
"Community partnership has been central in our RAISE work, and
the RAISE Action Framework summarizes our findings to identify and
implement strategies to support health equity at all levels of
health care and research," said Susan C.
Winckler, RPh, Esq., the Foundation's CEO. "By fostering
further collaboration and innovation, our Foundation aims to equip
stakeholders with tools and strategies to drive meaningful change
and improve health equity."
Recently, the Foundation hosted a webinar about the RAISE Action
Framework, highlighting successful initiatives to standardize data
collection and emphasizing the importance of addressing health
disparities and improving the representation of underrepresented
populations in health care data. Moderated by Dr. Rodriguez-Watson,
panelists included health care information experts from
Yale School of Medicine & Yale New
Haven Health System, Blue Cross Blue Shield Association,
Harvard Medical School & Harvard
Pilgrim Health Care Institute, and Amgen. The recorded webinar can
be viewed on the Foundation's webpage.
RAISE is supported by the Food and Drug Administration (FDA)
Office of Minority Health and Health Equity of the U.S. Department
of Health and Human Services (HHS) as part of a financial
assistance award (FAIN) totaling $875,000 with 100 percent funded by FDA
OMHHE/HHS. The contents are those of the author(s) and do not
necessarily represent the official views of nor an endorsement by
FDA/HHS, or the U.S. Government.
About the Reagan-Udall Foundation for the FDA
The
Reagan-Udall Foundation for the FDA (the Foundation) is an
independent 501(c)(3) created by Congress to advance regulatory
science to help the U.S. Food and Drug Administration accomplish
its mission. The Foundation works to improve health and safety
through stakeholder engagement and public-private partnerships that
facilitate innovation, foster the use of real-world evidence, and
identify modern tools and policies to keep pace with today's
rapidly evolving science.
Contact: Lea Ann
Browning-McNee
Lmcnee@reaganudall.org
301.509.1846
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SOURCE Reagan-Udall Foundation for the Food and Drug
Administration