View Letter
The Friends of NCHS is a coalition of public health
associations, patient organizations, scientific societies, and research
institutions who rely on the information produced by the National Center for
Health Statistics (NCHS) within the Centers for Disease Control and Prevention
(CDC). In order to support NCHS’s continued work to monitor the health of the
American people and to allow the agency to make much-needed investments in the
next generation of its surveys and products, the Friends of NCHS recommend an
appropriation of at least $200 million for the agency in fiscal year (FY) 2022.
Our recommendation reflects an increase to NCHS’s base budget of $25 million
from its FY 2021 appropriation. This funding will enhance NCHS’s ability to
continue to provide timely, unbiased, and accurate data on Americans’ health
during a period of increased public health concern due to the COVID-19
pandemic.
The COVID-19 pandemic highlighted the troubling limitations
of the Nation’s statistical system. While NCHS was successful in providing
critical information to monitor the impacts of the pandemic, the need for major
investments to expand on the scope, timeliness, quality and useability of information
was glaringly apparent. Investments are needed to improve the timeliness, scope
and quality of data on vital events, health care access and utilization and on
population health and in how the information collected is provided to a range
of users. Deficiencies in obtaining information on health care utilization both
for COVID and non-COVID related care and in how the pandemic affected other
aspects of the health of the population confounded the response. Investing in
the agency now will allow NCHS to use its expertise to become a nimble
twenty-first century statistical agency and reaffirm NCHS’s status as the
world’s gold-standard producer of health statistics. With additional funding,
NCHS will:
- Collect the information needed to monitor health and health
care and make it available when it is needed. NCHS will build on its strong
data collection systems by adopting new data collection methodologies and
targeting new data sources that will expand the range of information available
along with more timely data release
- NCHS will take advantage of web-based data collection as it
has with its RANDS initiative and will expand the timeliness of the collection
of bio measures including from blood and urine. Had such investments been made
it would have been possible to quickly monitor the impact of COVID-19 on the
population and providers and to determine the quality of data produced by
methods know to have biases.
- NCHS will develop partnerships with electronic health
record vendors, intermediaries, and health care data providers to standardize
and make available critical data items so that NCHS can monitor health care at
the national, state and local level in a timely manner and be able to monitor
quickly unexpected health outcomes.
- Data collections will be restructured so that it will be
possible to add modules to respond to emerging data needs. In the short run,
modules addressing the changing impact of COVID-19 will be added to NHIS and
NHANES such as the assessment of the health problems of COVID survivors.
Including bio measures in the NHIS, as noted above, has the promise of
providing critical information in a timely fashion.
- NCHS will work with registration jurisdictions to improve
quality and timeliness of vital statistics through the modernization of
electronic birth and death registration systems and medical examiner/coroner
case management systems and assuring interconnectedness with electronic health
records. There is a need for standardizing and rationalizing the collection of
vital registration data at the county and state level, improving the training
around vital registration data, and ensuring that critical demographic
information is systematically collected.
- NCHS will expand the use of machine learning and artificial
intelligence to improve efficiency of data collection and processing. These
technologies could allow NCHS to automate the coding of deaths of high public
health interest such as drug overdose deaths, emerging infectious diseases,
deaths due to natural disasters, and infant and maternal deaths, which are
currently coded manually.
- NCHS will advance the linkage and integration of data
reporting systems at the data provider level to increase collection and
processing efficiency, reduce burden on local data providers, and enable faster
analysis and release of statistics.
- Significantly expand the Data Linkage Program of NCHS
across HHS and other government data holdings. NCHS has over the years shown
the benefit in linking it survey and vital registration data with CMS, SSA and
HUD data holdings but has lacked the requisite support to really make a
difference. COVID-19 has shown that we need to bring data together in new ways
to better measure the impact of disease on disadvantaged populations. NCHS will
make its data linkage program at least equivalent to its other data systems
activities and will continually link to data systems throughout HHS and
government and to present its findings for policy makers in a timely manner and
provide these linked files in a secure environment for researchers.
- Make data more easily accessible for policy formation,
program monitoring and research. NCHS will restructure its data access platform
so that information can be found easily and presented in a way that will
address pressing questions about the range of health and health care concerns.
- NCHS will expand the availability of information for
geographic areas while protecting confidentiality. For some data systems this
will require sample expansion so that generalizable estimates can be made for
subnational areas. For some systems additional location information will need to
be obtained. For all systems, data access mechanism will need to be developed
that provide needed information at the geographic level desired while
protecting the confidentiality of the data providers.
- NCHS, along with CDC, is in the process of moving to a cloud
infrastructure, however NCHS will require additional security for personal
identifying information (PII) and electronic health records (EHR). For external
users, this could also take the form of a Virtual Research Data Center - many
researchers do not live close enough to a brick-and-mortar RDC and COVID has
severely restricted access to physical buildings.
- In addition to improvements in data collection and
dissemination, produce data analyses that are more policy relevant. In response
to the need for information to inform COVID-19 policy, NCHS modeled granular
data to produce more robust demographic and geographic analyses. An expansion
of work in this area will allow for the more rapid sharing of key findings. The
results of these models will only be of use if they are developed in a
transparent way with appropriate attention to model limitations. A robust
research program is needed to support these efforts.
Even under a tightly constrained budget, NCHS has pioneered
innovative new techniques to get the most value out of every taxpayer dollar.
Over the past several years, NCHS has closed the gap between data collection
and publication for leading causes of death, resumed official estimates of
maternal mortality after over a decade, implemented literal text analysis to
identify the drugs most frequently involved in overdose deaths, executed a
redesign of the Health Interview Survey to reduce the burden on respondents,
and contributed to the design and implementation of the Household Pulse Survey
during the pandemic. These achievements only serve to highlight how far
additional investment in NCHS would go towards helping the agency rise to the
challenges it faces.
We thank you again for your continued support of NCHS’s
essential data and statistics and encourage to you make sustained investments
in how we measure our nation’s health. We urge you to support a funding level
of at least $200 million for NCHS in FY 2022.
Friends of NCHS
Academic Pediatric Association
Academy of Nutrition and Dietetics
AcademyHealth
Advocates for Better Children's Diets
American Academy of Pediatrics
American Anthropological Association
American Association for Clinical Chemistry
American Association of Colleges of Nursing
American Association on Health and Disability
American Heart Association
American Pediatric Society
American Society for Nutrition
American Statistical Association
Association of Medical School Pediatric Department Chairs
Association of Public Data Users (APDU)
Association of Schools and Programs of Public Health
Consortium of Social Science Associations
Council of Professional Associations on Federal Statistics
(COPAFS)
Healthy Teen Network
Inter-university Consortium for Political and Social
Research
Lakeshore Foundation
March of Dimes NAPHSIS
National Safety Council
Pediatric Policy Council
Population Association of America
Power to Decide
Prevent Blindness
Society for Maternal-Fetal Medicine
Society for Pediatric Research