[House Hearing, 116 Congress]
[From the U.S. Government Publishing Office]
DATA FOR DECISION-MAKING:
RESPONSIBLE MANAGEMENT OF DATA
DURING COVID 19 AND BEYOND
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON INVESTIGATIONS
AND OVERSIGHT
OF THE
COMMITTEE ON SCIENCE, SPACE,
AND TECHNOLOGY
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTEENTH CONGRESS
SECOND SESSION
__________
SEPTEMBER 23, 2020
__________
Serial No. 116-82
__________
Printed for the use of the Committee on Science, Space, and Technology
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Available via the World Wide Web: http://science.house.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
41-411PDF WASHINGTON : 2021
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COMMITTEE ON SCIENCE, SPACE, AND TECHNOLOGY
HON. EDDIE BERNICE JOHNSON, Texas, Chairwoman
ZOE LOFGREN, California FRANK D. LUCAS, Oklahoma,
DANIEL LIPINSKI, Illinois Ranking Member
SUZANNE BONAMICI, Oregon MO BROOKS, Alabama
AMI BERA, California, BILL POSEY, Florida
Vice Chair RANDY WEBER, Texas
LIZZIE FLETCHER, Texas BRIAN BABIN, Texas
HALEY STEVENS, Michigan ANDY BIGGS, Arizona
KENDRA HORN, Oklahoma ROGER MARSHALL, Kansas
MIKIE SHERRILL, New Jersey RALPH NORMAN, South Carolina
BRAD SHERMAN, California MICHAEL CLOUD, Texas
STEVE COHEN, Tennessee TROY BALDERSON, Ohio
JERRY McNERNEY, California PETE OLSON, Texas
ED PERLMUTTER, Colorado ANTHONY GONZALEZ, Ohio
PAUL TONKO, New York MICHAEL WALTZ, Florida
BILL FOSTER, Illinois JIM BAIRD, Indiana
DON BEYER, Virginia FRANCIS ROONEY, Florida
CHARLIE CRIST, Florida GREGORY F. MURPHY, North Carolina
SEAN CASTEN, Illinois MIKE GARCIA, California
BEN McADAMS, Utah THOMAS P. TIFFANY, Wisconsin
JENNIFER WEXTON, Virginia
CONOR LAMB, Pennsylvania
------
Subcommittee on Investigations and Oversight
HON. BILL FOSTER, Illinois, Chairman
SUZANNE BONAMICI, Oregon RALPH NORMAN, South Carolina,
STEVE COHEN, Tennessee Ranking Member
DON BEYER, Virginia ANDY BIGGS, Arizona
JENNIFER WEXTON, Virginia MICHAEL WALTZ, Florida
C O N T E N T S
September 23, 2020
Page
Hearing Charter.................................................. 2
Opening Statements
Statement by Representative Bill Foster, Chairman, Subcommittee
on Investigations and Oversight, Committee on Science, Space,
and Technology, U.S. House of Representatives.................. 8
Written Statement............................................ 9
Statement by Representative Ralph Norman, Ranking Member,
Subcommittee on Investigations and Oversight, Committee on
Science, Space, and Technology, U.S. House of Representatives.. 10
Written Statement............................................ 11
Written statement by Representative Eddie Bernice Johnson,
Chairwoman, Committee on Science, Space, and Technology, U.S.
House of Representatives....................................... 12
Witnesses:
Dr. Lisa M. Lee, Ph,D., Associate Vice President for Research and
Innovation, Virginia Tech
Oral Statement............................................... 14
Written Statement............................................ 16
Dr. Lisa L. Maragakis, MD, MPH, Senior Director of Infection
Prevention, Johns Hopkins Health System
Oral Statement............................................... 24
Written Statement............................................ 26
Mr. Avik Roy, President, Foundation for Research on Equal
Opportunity
Oral Statement............................................... 29
Written Statement............................................ 31
Ms. Janet Hamilton, MPH, Executive Director, Council of State and
Territorial Epidemiologists
Oral Statement............................................... 43
Written Statement............................................ 45
Discussion....................................................... 61
Appendix: Additional Material for the Record
Letter submitted by the Premier Inc. healthcare alliance......... 74
DATA FOR DECISION-MAKING:
RESPONSIBLE MANAGEMENT OF DATA
DURING COVID-19 AND BEYOND
----------
WEDNESDAY, SEPTEMBER 23, 2020
House of Representatives,
Subcommittee on Investigations and Oversight,
Committee on Science, Space, and Technology,
Washington, D.C.
The Subcommittee met, pursuant to notice, at 11:03 a.m.,
via Webex, Hon. Bill Foster [Chairman of the Subcommittee]
presiding.
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Chairman Foster. The hearing will now come to order.
Without objection, the Chair is authorized to declare recess at
any time.
Before I deliver my opening remarks, I wanted to note
that, pursuant to House Resolution 965, today, the
Subcommittees are meeting virtually. I want to announce a
couple of reminders to the Members about conduct of this remote
hearing. First, Members should keep their video feed on as long
as they are present in the hearing. Second, Members are
responsible for muting and unmuting their own microphones, so
please keep your microphones muted unless you're speaking. And
finally, if Members have documents that they wish to submit for
the record, please email them to the Committee Clerk, whose
email address was circulated prior to the hearing.
Well, good morning, and welcome to this virtual hearing on
the Subcommittee of Investigations and Oversight of the House
Science Committee. Today's hearing focuses on how data drives
the decisionmaking at every level of response to COVID-19.
Ensuring the integrity, transparency, and accuracy of this
data, free from political interference, is crucial to keeping
us safe and prepared. Accurate data is crucial to policy
planners, to first responders and medical professionals, to
epidemiologists and scientific researchers, to politicians, and
to the general public. The American public should never have to
doubt that Federal data collection and management efforts serve
one purpose alone: informing public health decisions with the
best available science.
COVID-19 has presented an unparalleled challenge to our
Nation's public health infrastructure. Epidemiologists,
hospital administrators, and government data scientists have
worked tirelessly to adapt existing systems for the ever-
evolving landscape. With the CDC's (Centers for Disease Control
and Prevention's) National Health Safety Network's (NHSN's)
COVID-19 module, which was launched in late March, an existing
system was expanded to meet an urgent need at the peak of the
initial COVID-19 crisis. Experienced CDC surveillance
scientists collected, cleaned, and analyzed emerging data to
produce region-specific reports on COVID-19 and published these
reports publicly on the CDC website. Local and State health
authorities, as well as hospitals and infectious disease
modelers, were able to use these reports to gauge the severity
of the crisis in their region and make decisions on resource
management and disease control measures, and coordinating this
with nearby cities and States. While it was not a perfect
system--NSHN was reportedly overstretched and under-resourced
for this huge task--hospitals had the benefit of working with
CDC epidemiologists that they had cultivated relationships with
over the years.
In April, with minimal if any consultation with Congress,
HHS (Department of Health and Human Services) contracted with
TeleTracking Technologies to institute a totally new system.
This system would be entirely dedicated to the management of
COVID-19 data. In July, reporting to the new system became
mandatory. There is much to be said about the burden that this
switch placed on hospitals, and our witnesses are--today are
well-equipped to answer our questions about the effects of this
transition over the past two months.
But beyond implementation issues, this switch away from
the CDC has called into question the role of career scientists
in overseeing the data quality of the TeleTracking system. The
stakes could not be higher because it's so important that
public trust in the COVID-19 data underlying public health
decisions means so much to our country. Moving the Federal
Government's primary data base from the CDC with its expert
career epidemiologists to an HHS now dominated by short-term
political appointees places this all-important data at risk of
political manipulation.
And, unfortunately, concerns about political manipulation
of COVID-19 information are not unfounded. We have repeatedly
seen public attacks against CDC scientists for the sake of
bolstering the President's questionable claim that he has
successfully controlled the virus. Just this month, it was
reported that HHS political officials have attempted to edit,
delay, and prevent the publication of the CDC's Morbidity and
Mortality Weekly Reports. Only under a cynical Administration
hostile to science could these CDC analytical reports be
considered ``hit pieces'' aimed at undermining the President
unless somehow they see scientific truth as the enemy.
Now, there will always be a pressure to misreport public
health information. This can come from top down from
politicians at all levels who might benefit politically from
misrepresenting to the public their success at controlling
infectious diseases. It can come from industries, facilities,
or groups who stand to benefit financially from misleading the
public, or from the bottom up, from doctors, clinics,
hospitals, or nursing homes that have an incentive to minimize
public disclosure of the extent of spread of infectious
diseases at their patient care facilities. And there are
legitimate gray areas and a need for clear and consistent
reporting standards such as differing standards for
hospitalization, standards for reporting racial and ethnic
information, or the reporting of the simple cause of death for
patients with significant comorbidities.
As the pandemic continues to spread, we must ensure that
COVID-19 data is protected from inappropriate influence and is
transparent, accessible, and accurate. Unfortunately, we have
seen firsthand the dangers and the cost to human lives of
incorrect information being passed to decisionmakers when
Governors, Mayors, hospitals, and local health officials were
told to make plans based on faulty projections of the
availability of testing, or PPE (personal protective
equipment), or of sanitizer. Those plans inevitably fail, and
tens of thousands of Americans died.
As a Member of the Select Subcommittee on the Coronavirus
Crisis, and as Chairman of this Subcommittee, I'm committed to
ensuring that decisionmakers at all levels across the United
States have access to reliable data unmarred by political
influence.
So I look forward to today's hearing, hearing from our
witnesses about how we can best invest public health--in public
health infrastructure and disease surveillance that can serve
us through this pandemic and beyond.
[The prepared statement of Chairman Foster follows:]
Good morning, and welcome to this virtual hearing of the
Subcommittee on Investigations and Oversight. Today's hearing
focuses on how data drives the decision-making at every level
of the response to COVID-19. Ensuring the integrity,
transparency, and accuracy of this data, free from political
influence, is crucial to keeping us safe and prepared. The
American public should never doubt that Federal data collection
and management efforts serve one purpose alone: informing
public health decisions with the best available science.
COVID-19 has presented an unparalleled challenge to our
nation's public health infrastructure. Epidemiologists,
hospital administrators, and government data scientists have
worked tirelessly to adapt existing systems for the ever-
evolving landscape. With the CDC's National Healthcare Safety
Network's COVID-19 module, launched in late March, an existing
system was expanded to meet an urgent need at the peak of the
initial COVID-19 crisis. Experienced CDC surveillance
scientists collected, cleaned, and analyzed emerging data to
produce region-specific reports on COVID-19, and published the
reports publicly on the CDC website. Local and state health
authorities, as well as hospitals and infectious disease
modelers, were able to use these reports to gauge the severity
of the crisis in their region and make decisions on resource
management, and disease control measures, and coordinating with
nearby cities and states. While it was not a perfect system--
NSHN was reportedly overstretched and under-resourced for this
huge task--hospitals had the benefit of working with CDC
epidemiologists they had cultivated a relationship with for
years.
In April, HHS contracted with TeleTracking Technologies to
institute a totally new system. This system would be entirely
dedicated to the management of COVID-19 data. In July,
reporting to the new system became mandatory. There is much to
be said about the burden this switch placed on hospitals, and
our witnesses today are well equipped to answer our questions
about the effects of this transition over the past two months.
Beyond implementation issues, this switch away from CDC has
called into question the role of career scientists in the
TeleTracking system. The stakes could not be higher, because it
is so important that the public trust the COVID-19 data
underlying public health decisions. Moving the Federal
government's primary database from CDC--and its expert
epidemiologists--to HHS places this all-important data at risk
of political manipulation.
Unfortunately, concerns about political manipulation of
COVID-19 information are not unfounded. We have repeatedly seen
attacks against CDC scientists for the sake of bolstering the
President's claim that he has successfully controlled the
virus. Just this month, it was reported that HHS political
officials have attempted to edit, delay, and prevent the
publication of the CDC's Morbidity and Mortality Weekly
Reports. Only under a cynical administration hostile to science
could these CDC reports be considered ``hit pieces'' aimed at
undermining the President.
There will always be political pressure to mis-report
public health information, whether from politicians themselves
or from industries or groups who stand to benefit from
misleading the public about the risk posed to their bottom line
or political message. As the pandemic continues to spread, we
must ensure that COVID-19 data is protected from inappropriate
influence and is transparent, accessible, and accurate. As a
Member of the Select Subcommittee on the Coronavirus Crisis,
and as Chairman of this Subcommittee, I am committed to
ensuring that decision-makers at all levels, across the United
States, have access to reliable data unmarred by political
influence. I look forward to hearing from our witnesses today
about how we can best invest in public health infrastructure
and disease surveillance that can serve us through this
pandemic and beyond.
Chairman Foster. And the Chair will now recognize the
Ranking Member of the Subcommittee on Investigations and
Oversight, Mr. Norman, for an opening statement.
Mr. Norman. Good morning and thank you, Chairman Foster.
And I want to thank the witnesses for your participation today.
I hope we can use this hearing as an opportunity not only to
identify where data gaps exist, but also to identify potential
solutions to help us all better understand the ongoing
coronavirus pandemic and make well-informed decisions moving
forward.
Over the past several months, we've seen life as we know
it change within the blink of an eye. Cities across the country
went into shut down, schools and nonessential businesses were
closed, and stay-at-home orders were issued to limit the spread
of the virus. We saw our economy come to a halt as millions of
Americans lost their jobs and many businesses were forced to
permanently shut their doors.
On a daily basis, health officials, healthcare providers,
policymakers, and other leaders across the country have had to
make difficult decisions about the health and safety of their
communities. Decision-makers should rely on detailed and
accurate data to advise and prioritize response efforts. Data
issues are not a new public health problem, as data collection,
management, and sharing have challenged the public health
community since long before the coronavirus pandemic.
Unfortunately, the coronavirus pandemic increased the
strain on public health infrastructure all across our country.
Incomplete and at times inaccurate data is being reported to
State and local health departments, which is then used to
inform critical policy and operational decisions. The
catastrophic impact the coronavirus has had on long-term
facilities and nursing homes is just one example of how poor
data management has led to detrimental consequences over the
past few months. If better data had been available to
policymakers, we would have known just how vulnerable the
elderly are to this virus, and the countless deaths and
hospitalizations could have been prevented.
One of the biggest data challenges affecting the
coronavirus pandemic is that we do not know exactly how much of
it is out there, and researchers must estimate its prevalence
through data-driven disease forecasting and modeling.
Predictions on the number of coronavirus cases,
hospitalizations, and deaths help inform public decisionmaking
by calculating the expected impact of the pandemic in coming
weeks or even months.
Outdated public health systems are in desperate need of
modernization. Currently, the virus is spreading faster than
public health data and response efforts. This has been allowed
due to a lack of integrating public health systems all across
the State and local governments. We must consider how to
incorporate new and innovative techniques to improve slow and
static decisionmaking processes and this begins with
modernization of our public health infrastructure.
We cannot afford to make bad policy decisions due to poor
data during this pandemic and future public health emergencies.
It is important we understand the gaps and challenges with the
data that we have to best inform response efforts.
As policymakers, our decisions must be informed by data.
The quality of those decisions is directly affected by the
quality of the data we're using. I look forward to hearing more
about how we can improve the timeliness, accuracy, and
distribution of public health data.
I yield back.
[The prepared statement of Mr. Norman follows:]
Good Morning and thank you, Chairman Foster. And thank you
to the witnesses for your participation today. I hope we can
use this hearing as an opportunity not only to identify where
data gaps exist, but also to identify potential solutions to
help us all better understand the ongoing Coronavirus pandemic
and make well-informed decisions moving forward.
Over the past several months, we've seen life as we know it
change within the blink of an eye. Cities across the country
went into shut down, schools and non-essential businesses were
closed, and stay-at-home orders were issued to limit the spread
of the virus. We saw our economy come to a halt as millions of
Americans lost their jobs and many businesses were forced to
permanently shut their doors.
On a daily basis, public health officials, healthcare
providers, policymakers, and other local leaders across the
country have had to make difficult decisions about the health
and safety of their communities. Decision makers should rely on
detailed and accurate data to advise and prioritize response
efforts. Data issues are not a new public health problem, as
data collection, management, and sharing have challenged the
public health community since long before the Coronavirus
pandemic.
Unfortunately, the Coronavirus pandemic increased the
strain on public health infrastructure across the country.
Incomplete and at times inaccurate data is being reported to
state and local health departments, which is then used to
inform critical policy and operational decisions.
The catastrophic impact the Coronavirus has had on long-
term care facilities and nursing homes is just one example of
how poor data management has led to detrimental consequences
over the past few months. If better data had been available to
policymakers, we would have known just how vulnerable the
elderly are to this virus, and countless deaths and
hospitalizations could have been prevented.
One of the biggest data challenges affecting the
Coronavirus pandemic is that we do not know exactly how much of
it is out there, and researchers must estimate its prevalence
through data-driven disease forecasting and modeling.
Predictions on the number of Coronavirus cases,
hospitalizations, and deaths help inform public health
decision-making by calculating the expected impact of the
pandemic in coming weeks or even months.
Outdated public health systems are in desperate need of
modernization. Currently, the virus is spreading faster than
public health data and response efforts. This has all been
allowed due to a lack of integrating public health systems
across state and local governments. We must consider how to
incorporate new and innovative techniques to improve slow and
static decision-making processes amid this pandemic, and this
begins with modernizing public health infrastructure.
We cannot afford to make bad policy decisions due to poor
data during this pandemic and future public health emergencies.
It is important that we understand the gaps and challenges with
the data that we have to best inform response efforts.
As policymakers, our decisions must be informed by data.
The quality of those decisions is directly affected by the
quality of the data we're using. I look forward to hearing more
about how we can improve the timeliness, accuracy, and
distribution of public health data.
I yield back.
[The prepared statement of Chairwoman Eddie Bernice
Johnson follows:]
Thank you, Chairman Foster, and thank you to our panel of
witnesses for appearing before the Subcommittee today. The
COVID-19 pandemic has claimed 200,000 lives in the United
States. In my home state of Texas, there have been over 28,000
new cases reported in the past week alone. This is the highest
number of any state in the nation. The country still faces many
challenges in overcoming the pandemic including preparing for
the upcoming cold and flu season, providing aid to businesses
in this new coronavirus economy, and helping students navigate
new learning environments. Experts agree that the virus will
likely continue to circulate until there is a vaccine. It has
never been more important to rely on the scientific community
to guide our decision-making with the best available research
and data.
However, over the past few months, we have seen an
increasing number of attacks against career scientists and
their work in responding to the pandemic. Most recently, we
learned that political officials at HHS have routinely
challenged the science behind the CDC's Morbidity and Mortality
Weekly Reports, a vital and objective source of COVID-19 data,
and tried to silence agency officials in order to paint the
Administration's pandemic response in a better light. Last
week, Assistant Secretary Michael Caputo even accused CDC
scientists of ``sedition'' and of organizing a ``resistance
unit'' against the President. As Members of the Committee on
Science, Space, and Technology, we do not stand for such
blatant disregard of scientific integrity in the Federal
government.
Our ability to fight the pandemic depends greatly on
accurate, objective, and accessible data. With it, the Federal
government can efficiently distribute personal protective
equipment, testing supplies, and therapeutics. We can better
understand the spread of the disease and make prudent decisions
about the economy. Without it, hospitals, patients, and state
and local jurisdictions can be left in the dark, fighting on
their own without critical supplies. The American people must
be able to trust that decisions made at all levels are based on
trustworthy data and unmarred by political influence.
We have the world's top scientists doing their best to
respond to the pandemic. Yet if we allow their work and our
public health institutions to be influenced by political games,
we could lose the nation's trust at a critical time. Already,
many communities of color do not trust the government's role in
their health. Yet we know-from the CDC's own Morbidity and
Mortality Weekly Reports, in fact-that these communities have
been the hardest hit by the pandemic. As we get closer to the
possibility of a COVID-19 vaccine, we must ensure that the
Federal government is trustworthy and transparent in its
decision making.
Thank you again to our witnesses for testifying today. I
yield back.
Chairman Foster. Thank you. And at this time I would like
to introduce our witnesses.
Our first witness is Dr. Lisa M. Lee. Dr. Lee is the
Associate Vice President for Research and Innovation at
Virginia Tech and holds a faculty appointment in the Department
of Population Health Sciences. For 30 years, Dr. Lee has worked
in public health and ethics at the local, State, and Federal
levels, including 14 years at the CDC. She also served as the
Executive Director of the Presidential Bioethics Commission and
most recently as the inaugural Chief of Bioethics at Walter
Reed Army Institute of Research.
After Dr. Lee is Dr. Lisa L. Maragakis. Dr. Maragakis is
an Associate Professor of Medicine and Epidemiology at Johns
Hopkins University. She is the Senior Director of Infection
Prevention at the Johns Hopkins Health System and the Hospital
Epidemiologist for the Johns Hopkins Hospital. Dr. Maragakis
also serves as the Executive Director of the Johns Hopkins
Biocontainment Unit as Incident Commander for the Johns Hopkins
Medicine COVID-19 Response and is the Co-Chair for--of the
Centers for Disease Control and Prevention's Healthcare
Infection Control Practices Advisory Committee.
Our third witness is Mr. Avik Roy, who serves as President
and Co-Founder of the Foundation for Research on Equal
Opportunity (FREOPP). He's also the Founder of Roy Healthcare
Research. Mr. Roy is currently a Senior Advisor to the Working
Group on Health Care Reform at the Bipartisan Policy Center and
is a member of the Board of Advisors at the National Institute
of Health Care Management. His recent writings include papers
on reopening schools and colleges during COVID-19 and on
developing strategies for returning people to work during the
pandemic.
And our final witness is Mrs. Janet Hamilton--Ms. Janet
Hamilton. Ms. Hamilton is the Director at the Council for State
and Territorial Epidemiologists (CSTE). She's also--serves as a
Board Member of the International Network for Epidemiology and
Policy and has worked as a consultant on international
influenza surveillance in Mexico, Ukraine, and Greece. While
working for the Florida Department of Health's Bureau of
Epidemiology, she saw surveillance--she oversaw surveillance
programs for reportable diseases, hospital emergency
department-based surveillance, outbreaks and natural disaster
events, antimicrobial resistance, and influenza.
As our witnesses should know, each of you will have 5
minutes for your spoken testimony. Your written testimony will
be included in the record for the hearing. And when you've all
completed your spoken testimony, we will begin with questions.
Each member will have 5 minutes to question the panel. And if
there is time and interest, the Chair may entertain a second
round of questions.
And we will start now with Dr. Lee for 5 minutes.
TESTIMONY OF DR. LISA M. LEE, ASSOCIATE VICE PRESIDENT FOR
RESEARCH AND INNOVATION, VIRGINIA TECH
Dr. Lee. Thank you, Mr. Chairman and Members of the
Subcommittee, for this opportunity to give voice to the
critical issue of how the Nation collects, uses, and
communicates health data during COVID-19 and beyond.
In my written testimony I addressed three key points in
response to your questions, and these include, first, that
public health surveillance is a vital health intelligence
without which we experience loss of productivity and life;
second, that public health surveillance is a set of activities,
all of which must function both during and between public
health emergencies; and third, that public health surveillance
requires the public's trust. Without it, the system fails.
Because of time, I refer you to my written comments, which
provide a more complete description of my concerns.
And I'll use this time to highlight my last point: trust.
Trust is the foundation of all public health practice. It is
public health's currency. The public has to trust that their
government leaders are acting in the public's best interest.
This is especially important for health data, which, along with
financial data, are the two things people most want to keep
private. Public health professionals are ethically and legally
bound to protect identifiable information about individuals for
whom they provide services.
Another foundational principle of ethical data collection
is that data are used for the purpose for which they are
collected. The public must trust that the data they are being--
that the data--their data are being used to improve health and
for nothing else, not for profit for a private company, not for
law enforcement, and not to cause them social, reputational, or
financial harm. The public must also trust that the conclusions
drawn from the data that they provide to the system are
accurate, objective, and will result in benefits to them and
their community.
In the case of moving COVID-19 hospital surveillance from
CDC to the Office of the Secretary at HHS, trust is being
tested in a number of important ways. First, the removal of
CDC's public health surveillance experts who together have
hundreds of combined years of experience in the complex process
of public health surveillance. Removing them reflects the
removal of the world's experts in this field. There is no
equivalent of this expertise in the private sector.
CDC's surveillance experts work closely with State, local,
tribal, and territorial health departments to coordinate public
health surveillance for over 70 conditions. They've established
a trusted, collaborative relationship with State and local
partners over many decades. Their surveillance expertise is
sought after by countries and multilateral health agencies
across the globe. Removing CDC surveillance scientists from
this process is like removing trusted NASA (National
Aeronautics and Space Administration) engineers from sending a
rocket to Mars.
Second, the public's trust is challenged by moving data
collection to an office that is much more vulnerable to
political pressure from the White House during this most
volatile and important election year. Moving data collection,
though data collection alone is not equal to implementing a
carefully planned, effective public health system. Nonetheless,
moving the data collection to HHS is seen by many as a move
that puts the data in great jeopardy not only due to the loss
of that expertise but also because of lack of objectivity
driven by political pressure.
Most Americans--68 percent in a recent poll--do not trust
what the President says about the pandemic. The number of cases
and deaths continue to rise with no coordinated Federal
response insight. The President has suggested that the best way
to reduce case numbers is to stop testing. Given this and other
comments, many people find it hard to imagine that there's a
great deal of support to ensure that COVID-19 data under the
control of HHS will be complete and well-suited to direct
public-health action.
Finally, the data collection contract awarded to a private
for-profit company raises concerns. The White House has moved
reporting from CDC to a private entity, but it's abundantly
clear that public health surveillance is an inherently
governmental activity. It is a good that creates a number of
positive externalities and reduces important negative
externalities. And a good with these characteristics is not
responsive to what drives markets. When a private company takes
on an inherently governmental activity like public health
surveillance, there is a clear mismatch in mission. For-profit
companies are driven to succeed in order to meet their
obligation to ensure profits, as they should. But public health
surveillance is not a profit-driven activity, and this mismatch
creates a great deal of mistrust.
The American people have trusted the public health system
to protect their communities from infectious diseases since
before we were a country. The foundation of that system, the
eyes and ears of public health, is public health surveillance.
And without a well-functioning public health surveillance
system, we would be unable to meet our fundamental duty to care
for the health of our Nation. And if we cannot care for the
health of our Nation, we cannot care for our country's
prosperity. We cannot afford to fail.
Thank you, and I look forward to your questions.
[The prepared statement of Dr. Lee follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Chairman Foster. Thank you. And next is Dr. Maragakis for
5 minutes.
TESTIMONY OF DR. LISA L. MARAGAKIS,
SENIOR DIRECTOR OF INFECTION PREVENTION,
JOHNS HOPKINS HEALTH SYSTEM
Dr. Maragakis. Thank you. Good morning, Chairman Foster,
Ranking Member Norman, and Members of the Committee. Thank you
for the opportunity to appear before you today to discuss the
experiences of experts in infection prevention and control
across the United States who are on the frontlines of the
pandemic response, leading hospitals and health systems in
their efforts to accurately and effectively report and utilize
COVID-19 data.
I am Dr. Lisa Maragakis. I serve as the Senior Director of
Infection Prevention for the Johns Hopkins Health System. But
today in my testimony I am here to represent the members of the
Society for Healthcare Epidemiology of America, the
professional society of experts in infection prevention. Our
members work tirelessly to protect patients by detecting and
preventing healthcare-associated infections and combating the
threat of antimicrobial resistance organisms. Having access to
accurate, timely, and transparent data from a variety of
sources is vital to our infection prevention work. Accurate
data helps us to detect infectious disease transmission in
healthcare, understand the effectiveness of infection
prevention interventions, and devise innovative solutions to
prevent infectious disease transmission.
Our members serve a critical role on the frontlines of the
COVID-19 pandemic response by collecting, analyzing, and
utilizing data to inform critical decisions about policies,
procedures, and hospital resource allocation to keep healthcare
personnel, patients, and our community safe.
Healthcare epidemiologists and infection preventionists
are highly skilled in utilizing data to detect and respond to
infectious disease threats. Epidemiologists, public health
officials, and career staff scientists share the common goal of
wanting to make sure that accurate and timely information sent
to the right hands at the right time for evidence-based
strategic decisionmaking.
For decades, our experts have worked closely with and
relied upon experts at the Centers for Disease Control and
Prevention's National Healthcare Safety Network known as NHSN.
This is a sophisticated data surveillance system that collects,
analyzes, and reports healthcare-associated infection data. Our
expert counterparts at the CDC and NHSN are indispensable in
their expertise and understanding of the nuances and
intricacies of validating and processing these consequential
data.
The NHSN system works very well, and for my colleagues and
me it seems natural for the CDC to build upon and expand the
standardized and validated NHSN system to handle the COVID-19
surveillance data. The NHSN data reporting is largely
automated, minimizing the burden on healthcare facilities to
collect and report the data. It therefore was a shock when
hospitals were abruptly informed in mid-July that they had to
stop using NHSN for COVID-19 data reporting and instead use the
TeleTracking system, a new system which was not automated and
which was unfamiliar. The abrupt transition was made without
working with hospitals, associations, or the electronic medical
record vendors to automate the data reporting process.
Within 48 hours, all healthcare facilities had to scramble
to manually report the data elements into the new system, find
new data that had previously not been required, and create new
workflow processes. This created chaos and confusion and
diverted critical resources to accomplish the new reporting
requirements. All of this occurred under a cloud of fear that
critical Federal support could be withheld if hospitals failed
to meet these new requirements.
Although the transition took place several weeks ago,
chaos persists, and multiple changes to the system continue to
occur. The data in the new system are not validated by CDC
experts prior to being used to inform decisions made by the
Coronavirus Task Force and HHS officials. Data irregularities
and inconsistencies have been detected in the publicly reported
data. My colleagues and I have concerns over the accuracy of
the data that is being used for decisionmaking at the Federal
and State levels.
I am here today to share the Society for Healthcare
Epidemiology of America's colleagues and my experiences and to
ask for your help to ensure that our country, our hospitals,
our researchers, and the public have access to accurate,
timely, and transparent data to help guide our COVID-19
response.
Thank you, and I look forward to your questions.
[The prepared statement of Dr. Maragakis follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Chairman Foster. And thank you for that exquisitely timed
oral presentation.
The--after Dr. Maragakis is Mr. Roy for 5 minutes.
TESTIMONY OF MR. AVIK ROY, PRESIDENT,
FOUNDATION FOR RESEARCH ON EQUAL OPPORTUNITY
Mr. Roy. Chairman Foster, Mr. Norman, Members of the
Investigations and Oversight Committee--Subcommittee, it's good
to see many of you again, and thanks for inviting me here
today.
As you mentioned, Mr. Chairman, the Foundation for
Research on Equal Opportunity or FREOPP for short is a
nonpartisan think tank that focuses exclusively on ideas that
can improve the lives of Americans on the bottom half of the
economic ladder. I welcome the opportunity to discuss how
better data collection, reporting, and analysis can help all
Americans weather this pandemic.
My written statement contains a more detailed discussion
of this topic, but in my oral remarks, I'm going to focus on
three subjects. First, I'll discuss how poor data reporting led
to needless deaths of vulnerable seniors in our nursing homes
and assisted living facilities. Second, I'll discuss a critical
flaw in the way that we are reporting and interpreting
coronavirus PCR (polymerise chain reaction) testing data.
Third, I'll discuss the value of real-time data aggregation and
analysis in solving these two problems and also in distributing
potentially lifesaving medications to severely ill COVID
patients.
Many of you are familiar with our research on the tragedy
taking place in our nursing homes and assisted living
facilities. Zero-point-six percent of Americans live in long-
term care facilities, and yet within this 0.6 percent of the
population lies 42 percent of all deaths from the novel
coronavirus, 42 percent. A major contributor to this problem,
as Mr. Norman mentioned, has been a lack of consistent data on
long-term care infections and mortality.
In the spring, New York and other States ordered nursing
homes to accept patients being discharged from hospitals with
active COVID infections. At the time that these orders were
issued, New York wasn't even collecting data on COVID deaths in
nursing homes. Today, the State systematically undercounts its
nursing home deaths in ways that make it harder to protect
those who remain. CMS (Centers for Medicare & Medicaid
Services) now requires nursing homes to report COVID fatalities
directly to them, but if hard-hit States in the spring had
collected this data in real-time, we could've delivered more
PPE and testing supplies to long-term care facilities in need.
A second very large problem was recently identified by
Apoorva Mandavilli of the New York Times relating to the way in
which we're administering and reporting PCR test results for
SARS-CoV-2, the novel coronavirus. PCR is in theory the most
accurate test that we have for identifying people with active
viral infections, but as I detail in my written testimony, it
turns out that many laboratories have been overamplifying PCR
test samples by a factor of as much as 1,000. The experts
interviewed by Mandavilli were shocked to learn of this, and
many said that over half of the positive PCR test results in
their regions were likely to be false positives based on this
information.
This is no mere technical detail because many States and
school districts are using test positivity rates, case counts,
and case-based forecasts to determine whether or not to reopen
schools and their economies. It is essential for PCR lab
companies to immediately begin including amplification data in
the form of CT (cycle threshold) values when reporting a
positive result.
The good news is that public health officials are
beginning to gain the capabilities to better analyze nursing
home data, PCR test results, and many other types of
information essential to reducing the spread of COVID-19. One
of these new capabilities is HHS Protect. HHS Protect is
helping the government reduce--distribute remdesivir, the FDA
(Food and Drug Administration)-approved drug that has shown
signs of reducing mortality in hospitalized COVID patients.
Without detailed real-time information from all U.S. hospitals
on COVID-19 patients, it wouldn't be possible for authorities
to distribute limited supplies of remdesivir to patients who
can most benefit from its use.
The CDC chose to help build HHS Protect precisely because
it's traditional decades-old system, the National Healthcare
Safety Network, would have taken months to be upgraded to the
same level. Dr. Redfield has been vocal in his--in espousing
the value of this new system, and I refer you to his remarks
that I've quoted in my written testimony.
The transition to HHS Protect has had understandable
challenges. It's a bit like changing an airplane's engine in
midflight. And the concerns raised by my colleagues today
regarding disruption and trust are important ones to address so
that Americans can have full confidence in the new system. But
HHS Protect does have significant benefits. It's dynamic
approach to data aggregation will enable public health
authorities to analyze detailed PCR testing data so we can
better understand whether or not patients with very high CT
values are at risk for illness or transmission. And CDC
Director Redfield has said that the availability of HHS Protect
will free up NHSN personnel to apply greater focus on
protecting vulnerable seniors in nursing homes. As I noted
earlier, nearly half of all deaths in the United States from
COVID-19 have taken place in long-term care facilities.
There's much more to say, let me stop there. I look
forward to our discussion today. Thank you very much.
[The prepared statement of Mr. Roy follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Chairman Foster. Thank you. And next is Ms. Hamilton for 5
minutes. And I think you--yes, there's a muting problem
perhaps.
TESTIMONY OF MS. JANET HAMILTON, EXECUTIVE DIRECTOR, COUNCIL
OF STATE AND TERRITORIAL EPIDEMIOLOGISTS
Ms. Hamilton. Are you able to hear me now?
Chairman Foster. OK.
Ms. Hamilton. OK. Chairman Foster, Ranking Member Norman,
and Members of the Subcommittee, thank you for the privilege to
appear before you today. I am Janet Hamilton, Executive
Director of the Council of State and Territorial
Epidemiologists. CSTE represents public health epidemiologists
nationwide working on the front lines to respond to COVID-19.
Our hearing subject today is one of the most important
issues we need to tackle as a country. After years of neglect,
our public health data infrastructure is on crutches,
antiquated, and in dire need of security upgrades. Sluggish
paper records, phone calls, spreadsheets, and faxes, requiring
data entry remain in widespread use and have significant
consequences: delayed detection and response, lost time, lost
opportunities, and lost lives.
COVID-19 has taken advantage of gaps in our current
system. First, we do not have a seamless interoperable way for
healthcare to communicate with public health. Our Nation needs
electronic case reporting. It's that simple. We need to ensure
that when providers see patients in any setting, patient
demographics, clinical information, and test results for
reportable conditions like COVID-19 are rapidly shared with
State and local public health and then incorporated into CDC's
National Notifiable Disease Surveillance System.
Second, we need an electronic lab test ordering process
that supports the collection of information to launch a rapid
public health response. The fax machine shouldn't be the
standard of care. Imagine the time it takes a busy health
department to sort through thousands of faxed records,
decipher, and digitize them daily.
Third, nearly 1/3 of all emergency department visits are
not reported to the National Syndrome Surveillance System.
And lastly, death certificates are sometimes filed on
paper. Deaths surpassing 200,000 tragically tells just part of
the human cost from COVID-19.
It takes weeks to uncover and link the death data with
case, laboratory, and medical examiner data without which we
cannot understand the racial and ethnic disparities exacerbated
by COVID-19. The absence of information leaves us blind to the
truth about the pandemic. State and local public health
departments indicate initial COVID-19 lab reports are missing
street address and phone number as much as 50 percent of the
time. And data for race and ethnicity are missing as much as 85
percent of the time, despite that these data are already stored
in electronic health records.
I have personally felt frustration and anguish and seen my
colleagues suffer, too, when we want to provide answers to
community members. Despite wanting to help, we can't because
our public health data system arteries are clogged. How many
cases of COVID-19 are there in my area? Where will the next
hotspot be? When can schools open safely? We can't answer these
questions without data.
We have started to implement solutions, but it will take a
coordinated, sustained approach between State and local public
health, CDC, Congress, and the Federal Government, as well as
our healthcare partners. We need to move now. We need to move
fast. And most importantly, we need to do all of this with
public health: CDC with their State partners leading.
CSTE is part of the data elemental to health campaign.
Before COVID-19, we called on Congress to provide first-ever
dedicated funding for public health data systems to build a
21st-century public health data superhighway. As I've outlined
today, the coordinated systems for this infrastructure already
exist. We do not have a science problem. We have a resource
problem. With sustained resources, all jurisdictions could come
online with the core systems, and CDC could build its own
secure platform to receive electronic data from States. So far,
a $550 million down payment has been allocated for the data
modernization initiative at CDC. This funding is critical, but
it cannot be a one-off. The Federal Government must commit to
long-term, annual, base-budget funding to CDC.
To close, CDC, together with State and local public health
officials, have led every public health response to date. In
this response, we have seen inconsistent Federal and State
coordination. State public health leaders must have direct
regular access to Federal officials to help contain the virus
in their regions. We cannot and should not make essential
policy decisions without CDC and public health experts on the
ground who fully understand the data-collection challenges and
strengths.
Thank you for the opportunity to testify before the
Subcommittee today.
[The prepared statement of Ms. Hamilton follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Chairman Foster. Thank you. And at this point we will now
begin our first round of questions, so the Chair will now
recognize himself for 5 minutes.
Dr. Lee, we know that surveillance science is more complex
than simply collecting data and posting it on a website. The
data often needs to be cleaned and validated for accuracy, and
anomalous--anomalies must be tracked down, errors corrected.
Epidemiologists then search for trends and meaning behind the
raw numbers. They translate their findings into actionable
advice for decisionmakers. And I'm very concerned that we've
lost a lot of institutional knowledge by requiring hospitals to
report critical data to TeleTracking directly instead of
through the CDC.
So, Dr. Lee, in your opinion, does HHS have the in-house
expertise to handle the data collected by TeleTracking and use
it to make decisions about resource allocations? And perhaps if
you could also give some examples of the sort of, you know,
data cleaning and error correction that have to take place.
Dr. Lee. Thank you, Mr. Chairman, for that great question.
As I mentioned in my testimony, both written and oral, my--you
know, I do not think that, you know, there is expertise
anywhere except at CDC in terms of the complex set of
activities that it takes to actually develop and implement a
system. There is expertise, but it's--it lies squarely at CDC.
As I said, there's hundreds of years of experience there.
I think the point really is to recognize that developing a
system that measures sentinel events requires careful thought.
It requires an understanding of science and epidemiology. It
requires a sense of what specific data will be needed for
decisionmaking. So for COVID-19, for example, we've made
efforts to collect data on a number of events or signals. We
monitor the number of tests to assess how well we're actually
measuring the impact of the disease. We use the number of
proportion of positive tests to measure the current spread of
infection. We use the number of hospitalizations to say
something about the number and characteristics of severe cases.
We also collect data on the number of deaths as an indicator of
both delayed care and severity of infection but also on the
effectiveness and equitable distribution of treatment.
So these kinds of decisions that--about which events to
include in a surveillance system are critical because they help
us describe what's happening. And, you know, we have to make
sure that when we have the data, we are deciding how to
appropriate and allocate resources to decide when and where to
deliver public health interventions, so--and also to evaluate
when these interventions are useful and have helped us to
combat outbreaks.
So these important decisions about the design of a system
should be made by public health surveillance scientists with
the training and experience in data management, epidemiology,
statistical analyses and interpretations, as well as a good
handle on how to communicate risky--risk and--risk data and
complex data and, you know, data that are not complete--
incomplete data. And since----
Chairman Foster. Well, thank you. I should--I have to----
Dr. Lee. Sure.
Chairman Foster [continuing]. Get into other questions
here.
Dr. Lee. OK.
Chairman Foster. You know, I'm concerned about, you know,
the way that the TeleTracking requirement was implemented. You
know, this is--Dr. Maragakis mentioned, it was actually more
than a fear that payments would be suspended. Secretary Azar
mentioned--emailed hospitals on April 21st and said please be
aware that submitting data through TeleTracking is a
prerequisite to payment, which is not what you want to hear
when you--you're, you know, trying to deal with an ongoing
emergency and then you have to divert personnel to learn a
whole new system and work through its deficiencies.
And so do you know--you know, can you comment, Dr.
Maragakis, about some--how hospitals may have been overwhelmed
and under-resourced, you know, in trying to respond to this
when that requirement came down?
Dr. Maragakis. Yes, thank you, Mr. Chairman. It was
extremely disruptive. The nature of the transition between
systems really led to what was largely a manual process,
whereas previously we had automated ways that had been
constructed to extract the data from electronic medical systems
and to report these data. As I mentioned in my opening
testimony, manual processes had to be implemented. Many new
data elements were required. The reporting frequency was
escalated to daily. And so this has been a very large burden on
hospitals and healthcare facilities across the Nation, and many
are under-resourced to meet that challenge.
Chairman Foster. Thank you. My time is expired, and I now
recognize the Ranking Member, Mr. Norman, for five minutes.
Mr. Norman. Thank you, Chairman Foster.
Mr. Roy, in your testimony you identified that 42 percent
of all U.S. deaths from COVID-19 have occurred in long-term
facilities. Namely, New York City has been publicized as one of
the worst for the deaths. You go on to explain how some State
Governors made disastrous decisions to force long-term
facilities to accept COVID-19-infected patients due to poor
data on how the virus disproportionately affects the elderly.
You then indicate that some States are also producing
misleading data on the number of deaths occurring in these
facilities. In your opinion, how did we allow inaccurate data
reporting to occur, and how can we ensure better reporting in
the future?
Mr. Roy. Thank you, Mr. Norman. So the big problem here
was that at the very beginning of the pandemic when we did not
know very much about SARS-CoV-2, the novel coronavirus, so
there's obviously a lot we still don't know, but in the
beginning we knew even less. And a lot of the playbooks that
the policymakers started using at the State and local levels
and at the Federal level to some degree were based on influenza
pandemics. But coronaviruses are not--do not necessarily behave
in the same way as influenza viruses.
And so one of the ways in which this played out was the
biggest concern that you saw, for example, in New York and
other States like New York that adopted this policy was, well,
we've got to keep people out of the hospital because we see all
the pictures from Italy of the hospitals being overwhelmed.
That's the thing we've got to avoid. We've got to avoid
hospitals being overwhelmed. And you, nursing homes, are going
to have to take these patients because all we care about is
avoiding hospitals being overrun.
The problem is that in coronavirus pandemics a big problem
is how lethal SARS-CoV-2 in this case is in vulnerable seniors
because compared to influenza, SARS-CoV-2 is much more deadly
in the elderly relative to influenza, which affects the young
as well to a more significant degree than COVID-19 does. So, as
a result, they basically forced these infected patients in
nursing homes and not--weren't even aware of how the nursing
homes were spreading SARS-CoV-2 and COVID-19 illness. And
until, again, you know--until it was effectively too late, they
didn't start pulling that data.
And to this day, New York State what they do now is they--
if you die in a hospital but you got infected in a nursing
home, they are counting it as a hospital death, not a nursing
home death, so we still don't have clear visibility into how
many people in New York State and New York City have died in
long-term care facilities. So all this to say these are some of
the problems early on.
Now, CMS is starting to require this data to come in
directly to CMS, and that's helping, but this is an example of
the way faulty theories and, you know, led to mismanagement,
and we could've used data to correct those faulty theories and
we didn't.
Mr. Norman. Thank you. And, you know, you mentioned that
Congress has been attempting to upgrade the American public
health infrastructure for the last decade. What other steps can
Congress take to modernize sluggish public health data systems
so that we are better prepared for public health emergencies?
Mr. Roy. Well, as I mentioned in my written testimony, as
you know, Mr. Foster, there have been numerous attempts by
Congress to upgrade public health surveillance infrastructure.
Until very recently, none of those efforts by Congress, even
though they were well-funded and had mandates and GAO
(Government Accountability Office) reports and inspections, led
to any change in the modernization of that surveillance
infrastructure. So it's good that we're starting to see that
difference, and I think it will be very important for Congress
to deploy its authority to see the difference or the
improvement if there is an improvement from HHS Protect and
learn how to use HHS Protect as a more 21st-century approach to
public health surveillance.
Mr. Norman. OK. And we're running short on time, but can
you expand on some of the consequences of overestimating the
number of positive cases that exist?
Mr. Roy. Yes. So as I mentioned in my oral and written
testimony, the--one of the big issues right now is you have a
number of States that are locking down or closing schools based
on test positivity rates and cases per 100,000 residents. But
if a number of those positive test results are based on PCR
tests, it turns out that in many parts of the country roughly
half of the positive PCR tests appear to be false positives
based on this reporting around CT values or the level of
amplification of the PCR samples that lab companies are using.
So it's incredibly important that we have a better
understanding of what's going on in terms of the actual level
of positivity from a CT value standpoint of these PCR tests.
That may be part of the reason why--while we're seeing positive
cases here and in Europe, we're not seeing--or particularly
here, the same level of deaths per positive case that we saw
early on in the pandemic. There are other reasons as well, but
that may be one of them. But most importantly, because of the
harm from economic restrictions and from school closures, it's
incredibly important that we are accurately understanding the
true extent of the spread of the virus.
Mr. Norman. Great. Thanks so much. I yield back.
Chairman Foster. Thank you. And I'll now recognize my
colleague from Oregon, Ms. Bonamici, for 5 minutes.
Ms. Bonamici. Thank you, Chairman Foster and Ranking
Member Norman. But thank you to our witnesses. And I know we're
talking about data today, but I really appreciate the
acknowledgment that lives are represented by this data. And
you've articulated why accurate, reliable data and our ability
to understand and learn from it is so important to save lives
and protect public health. And now we're at this 200,000-lives-
lost threshold, and each of those individuals was more than a
statistic, and we have to keep that in mind as we're learning
today and how are we going to apply the hard lessons over the
last several months.
And I want to start with Dr. Maragakis. As you referenced
in your testimony, HHS made reporting to TeleTracking mandatory
on July 10 and stated that hospitals had five days to come into
compliance with this requirement, also announced--HHS also
announced TeleTracking reporting would now be the sole
mechanism to calculate distribution of treatment and supplies
for COVID-19. And I understand this new system included many
data points that had not previously been requested by CDC, and
the terminology used in TeleTracking was unclear, leading to
confusion about what exactly was required.
So will you please explain the importance of standardized
data and what it would mean if there are differences in how
COVID data is compiled and reported? For example, if New York
City is reporting probable COVID deaths but New York State is
reporting only confirmed deaths, what does that mean? Describe
what challenges that might lead to. And I also want to follow
up on my colleague Mr. Ranking Member Norman's question. If you
would respond, what is the consequence of underestimating the
number of positive COVID cases as well?
Dr. Maragakis. Thank you for the question. As you note,
standardization of definitions is critical so that when we are
counting and looking at the data, we are comparing apples to
apples. That is ideally represented by Federal, national,
standardized definitions that then can be trickled down through
the State health departments, and facilities can follow this
guidance and accomplish accurate reporting so that we are sure
when we are looking at the numbers that we know precisely what
is being measured. This is so critical in the case of the
COVID-19 data.
And, as you mentioned, the switch from NHSN, which is a
well-established, validated system with experts that are used
to measuring these kinds of data elements, it led to poorly
defined data elements, a lot of confusion, no user manual,
difficulty getting the answers, and manual reporting of data.
And so junk in, junk out, unfortunately. If we don't have good
data and good definitions, we can't rely on what comes out the
other end.
Ms. Bonamici. And so all of these issues that you have
described, have the--all the entities, hospitals and others
that are reporting to TeleTracking, have they--has HHS been
responsive to concerns that have been raised? Have they
responded to feedback in the months since the switch?
Dr. Maragakis. The implementation of this new system has
been extraordinarily rocky. It's put an incredible burden on
hospitals across our Nation. In the earliest days there was no
guidance. This has gotten slowly better over time, but it has
been very difficult to get the answers that health systems and
hospitals need in order to accomplish the reporting.
Ms. Bonamici. And do you agree that based on all those
issues and concerns there is a possibility that there could be
serious consequences from underreporting COVID-19?
Dr. Maragakis. Absolutely. I feel--and we have to remember
that this is not just about the cases of COVID-19 but about
critical data elements that have to do with our response, so
personal protective equipment on hand, staffing levels, and
other data elements that are vital to our response and knowing
how to prepare ourselves and allocate our resources.
Ms. Bonamici. Thank you. And I wanted to get in a question
to Ms. Hamilton as well. Thank you for your testimony. You
raised similar concerns about mismatch and duplicative data in
your reporting, and we know how important that accurate data
is. State public health officials are operating under enormous
strain during the pandemic, as you noted, but if the Federal
data reporting and management system fails to perform
competently, the States are forced to react and try to fill
some of that gap. How are State public health agencies reacting
to concerns about the lack of validation and transparency for
data from TeleTracking? And are they taking steps to strengthen
their own data collection capabilities? And why--what can they
do to improve short-term data reporting and management at the
State level? How important it is for them to collaborate on
subsequent changes?
Ms. Hamilton. Yes, those are great questions, and changes
that affect healthcare affect public health because we work in
such collaboration and coordination. I think the first thing is
that our guiding principle needs to be to strengthen our public
health infrastructure and ensure that data flows from
healthcare to State local public health and then onto the
Federal Government, so it should be flowing through the public
health system, not around the public health system.
And when we saw a change like this, I mean, it was
confusing. I think you've heard that very well. And it was
confusing for public health as well. And States have then gone
and worked very closely with their healthcare providers to
figure out what kinds of intermediaries can be put in place so
that the right data is available at the local level for that
important decisionmaking.
You know, I also feel like I want to comment on something
that has come up already, which is funding for public health.
And I heard a comment that there had been a lot of funding. And
I really want to make clear that public health has never had
dedicated funding for surveillance system data modernization
and improvement. And that's a really critical piece. We need
that foundational core funding, and it needs to happen on an
annual basis. There has been----
Chairman Foster. And I'm afraid I must----
Ms. Bonamici. The time is expired but----
Chairman Foster. I must interject----
Ms. Bonamici [continuing]. Thank you. Thank you, Mr.
Chairman. Thank you for your----
Chairman Foster. Thank you.
Ms. Bonamici [continuing]. Testimony and----
Chairman Foster. And for Members that are interested, I
will entertain having a second brief round of questions to
follow up on anything--issues that have come up.
I now recognize my colleague from Virginia, Mr. Beyer, for
5 minutes.
Mr. Beyer. Mr. Chairman, thank you very much. I really
appreciate your doing this. And I'm so glad that we're here to
talk about COVID-19 data and data management and specifically
about strengthening the public health infrastructure. This has
really been one of the key weaknesses in the U.S. response.
I had a conversation with Dr. Chris Murray back in April I
guess, who is the founder, the leader of the Institute for
Health Metrics Evaluation, the first website I check every
morning. And he was so frustrated by the lack of data. And to
that end we put together the Improving COVID Data Transparency
Act, which I'm sure that Chairman Foster and Ms. Wexton, and
Ms. Bonamici are already on.
I come back to the only computer stuff, GIGO, the garbage
in, garbage out. If you don't know what you're doing, it's very
difficult to manage it. Werner Heisenberg, Dr. Foster is our
only Ph.D. physicist in the Congress, who understands that
anytime you measure anything, you inevitably change it. And if
you measure it well, we're going to change it well.
But let me give you the information framework though
because we have unfortunately--I don't mean this to be
political, but this is the reality. We have a President who's
undermining the role of our Federal institutions. He has a list
of the intelligence agencies but rather would listen to foreign
dictators. He undermines the scientific standards at the EPA
(Environmental Protection Agency) so they can pollute unabated.
And he undermines the credibility of our health agencies by
censoring or convoluting the messaging for political reasons.
Early in the Trump Administration I raised concerns about
the odd precedent of politicizing basic CMS correspondence to
the medical community, so Seema Verma then hires image
consultants. But we didn't imagine that the same narcissism in
our health system response would hold true during a pandemic
that placed image over American lives. And we've seen the CDC
and Dr. Fauci be hamstrung in briefing to the public on the
epidemic, and we've seen these coronavirus hearings turn into
functional Trump campaign rallies.
So responding to this worry, the point of this bill is to
depoliticized CDC communication. To have noncareer--
nonpolitical rather, nonpolitical career CDC staffers brief the
public on the Morbidity and Mortality Weekly Reports. These are
the gold standard, a weekly epidemiology digest published by
the CDC to share the latest information. And now we understand
that the Trump officials actually interfere with these reports,
too.
So, Dr. Maragakis, what's the danger in this type of
political review or efforts to intimidate the author's reports
other than 200,000 American lives?
Dr. Maragakis. Thank you for your question. You know, we
are in such a crisis in this country due to the pandemic, and
there are terrible effects, both health and non-health effects,
but we all really need to use these data and the guidance from
the CDC to be able to trust that it is scientifically based,
that it is evidence-based because we have enough work to do on
our plates even if we had that clear guidance. And so
manipulation or confusion or unclear messaging really just
dilutes the message, it confuses the public, and it makes it
more difficult for us to take the steps that we need to do to
prevent viral transmission and to diagnose and care for the
patients who are afflicted with this disease.
Mr. Beyer. Thank you very much. Dr. Hamilton, as I
understand it, only one electronic healthcare record company
can currently do electronic case reporting immediately to local
health departments. Can you talk about the benefit of
electronic case reporting and why that would help us to respond
faster?
Ms. Hamilton. Yeah, absolutely. That's a great question.
And from the public health perspective, when we look at data
modernization, we feel that this is probably the single biggest
transformation that we need, and we just have not seen the
commitment to fund this and invest in it.
I have some great colleagues across the country that have
started to implement electronic case reporting. Most
specifically, I would report from the Florida Department of
Health, who has recently implemented it. And their comments in
terms of data improvement from review of the initial data thus
far is, amazingly, things like missing information is--that gap
has really been closed, so the address information is missing
less than 1 percent of the time, phone number as well. I mean,
these are huge improvements when we look at the ability to
identify hotspots and contact patients. The race and ethnicity
information also dramatically improves going down to just
missing for a few percentage points.
So, you know, it's the reports that come in, and then that
allows public health to act in an immediate way to contact the
patient, to identify contacts rapidly, and then even before you
can reach someone, you can start aggregating it and identifying
community-based hotspots, as well as health disparities based
on that race and ethnicity data.
Mr. Beyer. That's great, thank you. And, Mr. Chair, I
yield back with a comment I have a couple of children who are
form-phobic, but when you do it on the internet it won't let
you go forward until you put in your address. It really helps.
Chairman Foster. Thank you. And I will now recognize my
other colleague from Virginia, Ms. Wexton, for 5 minutes.
Ms. Wexton. Thank you, Mr. Chairman, and thank you to the
witnesses for joining us here today.
You know, following up on the questions of my colleague
from Virginia, I would ask of all the witnesses, what can we in
Congress do to protect our public health infrastructure from
political pressure? Is there anything we can do or are we just
out of luck?
Dr. Lee. Well, I'll start by saying that we have to rely
on evidence, and we have to rely on the experienced public
health professionals who have been doing public health
surveillance before we were even a country. In 1741 was the
first rules around tavernkeepers were, you know, being required
to report contagious diseases to the colonial leaders. And I
think the more that we can rely on the expertise and the
experience of our State, local, and Federal health officials,
the public health officials and keeping it out of the
opportunity to spin, to make data, you know, a political pawn
or a political tool is going to be critically important. And I
can't agree with you more that what we need is Congress to
fund--consistently fund public health surveillance and to
ensure that that--experts who have experience are the ones who
develop and maintain and implement these systems.
Ms. Wexton. So through our funding function and our
oversight function I guess is how we can do it. Thank you, Dr.
Lee.
Now, my colleague from Virginia and I, we are very proud
that our Commonwealth was the first State in August to rollout
the COVIDWISE app. And people are putting it on their phones.
I've got it on mine. Don has it on his. And, you know, it's a
very convenient way to do contact tracing. It'll let you know
if there--you've been in prolonged contact with a person who
ultimately tests positive. But in order for it to work, we need
people to actually have it on their phones. And because it has
Bluetooth--it operates under Bluetooth technology instead of
location data, it helps limit some of the privacy concerns that
a lot of people have. So what can we as public officials do to
help support our local health departments to get more people to
put these apps on their phones? Because if we have 150,000
people who have downloaded it on our phones in Virginia, that's
great, but in a State with a population of over 8 million, it's
still just a small proportion of people. So what can we do to
support those efforts? Dr. Lee, do you have any thoughts on
that?
Dr. Lee. Thanks. I do actually. I think Ms. Hamilton will
have some more State and local perspective, but I think the--as
I said in my testimony, the primary concern here for folks is
that the data are being used for the reasons they were
collected. If people do not trust that that's the case, if they
think that the data might be used to call ICE (Immigration and
Customs Enforcement) or to cause some other kind of harm or to
track their location for other reasons, people will not trust
the app.
So we have to make sure that we go back to first
principles of what ethical data collection is for public
health, and that means you collect the least amount of data
necessary, you use them for the purposes for which they were
collected only, and that you protect the privacy and
identifiability of the data. Public health has been doing that
for decades, for centuries, so I think we have a pretty good
track record.
Ms. Wexton. Thank you very much. Dr.--Ms. Hamilton, do you
have anything to add to that?
Ms. Hamilton. Yes, I mean, I think at the core we need the
public's trust, and the more that we can support that with
leadership and recognition that public health has been the
longest-standing steward of protected health information. We
have done this since our inception, and we have done it well,
securely, and safely, and we will continue to do that. And this
is about people protecting themselves and their families.
And I think we have to recognize as well that traditional
contact tracing, because of trust issues right now, is really
suffering. You know, I hear from State colleagues they're
identifying one or fewer contacts per case because people are
not providing that information because of the erosion of trust
that we have seen. And so we really need voices to lead and
talk about how much experience public health has in this space
and how critical it is to use all of the resources that we have
available to us in order to really halt the spread of this
virus.
Ms. Wexton. Thank you very much. And with that I'm going
to yield back because I see my time is almost up, so thank you
so much for your responses.
Chairman Foster. Well, thank you. And I guess there is
some Member interest in a quick second round of questions, and
so with that, I will recognize myself for 5 minutes for
actually a single question.
You know, there--I--Ms. Hamilton and others have mentioned
the benefits of automating this in conjunction with the
electronic health record systems. And one of the big issues in
any of the automation and cross-operability is the lack in the
United States of a unique patient identifier. And this is
something that's been a long-standing problem in our country.
It was one of the things that enabled the opioid epidemic. The
fact that there was not a unique patient identifier made it
impossible to identify a patient who was getting multiple
opioid prescriptions from multiple doctors in--potentially in
multiple States.
And so--and this has been--actually it's Congress' fault.
There was--25 years ago, my former colleague Ron Paul adopted a
policy rider, got a policy rider adopted that banned HHS from
promulgating a unique patient identifier. And so this has been
killing, by many estimates, tens of thousands of Americans
every year due to preventable medical errors, due to patient
misidentification. And of course with the COVID crisis, you
know, there--additional flaws in a system without a unique
patient identifier have been made clear, you know, everything
from getting, you know, uniform death record reportings to just
combining the healthcare records.
Zeke Emanuel in his recent study of many different
countries identified this as a huge problem in the United
States that isn't present in advanced countries where even in
countries where there are multiple providers of electronic
health records, there is a unique identifier so you show up and
say, OK, here is my patient ID number, and then you can bring
in the records from many medical providers.
And so, you know, I am very proud that we're able at least
in the U.S. House to start fixing this problem. You know, faced
with this, my Republican partner Representative Kelly and I
put--got a floor vote last summer, and a strong bipartisan vote
in favor of repealing that ban and so to finally allow a unique
patient identifier for patients that wish one.
And second, we, just a month or two ago, got it adopted
unanimously in the U.S. House, and so we're now really--this is
something where the Senate can act by simply concurring with
the House and save thousands of American lives.
So I was wondering if you can comment on the importance of
being able to simply avoid a patient misidentification in this.
You know, Ms. Hamilton or any one of our panelists.
Ms. Hamilton. You know, I'll just say that de-duplication
of records is a huge issue. And, you know, I provided for you
all as part of my testimony today some of the lab reports that
health departments currently receive in the thousands, and I
hope that you'll be able to have those not easily viewable on
screen, but please do look at some of those handwritten
reports. I mean, we're deciphering these things, and it does
create issues and problems. It creates issues identifying the
right individual, and we get multiple reports on individuals.
People are tested multiple times. Some of the lab reports only
include a name and a date of birth with nothing else at all, so
matching is certainly an issue with important consequence and
one that we address very carefully within public health to do
that matching.
Chairman Foster. Yes, well, I----
Mr. Roy. Mr. Chairman, I just want to add that I share
this concern very much, and I'm happy to be helpful to you and
the Committee in trying to find ways to advance policies that
would achieve a unique patient identifier.
Chairman Foster. Yes. It is--I think the ground has
shifted on that politically on both sides of the aisle
certainly in the U.S. House. There's just unanimous
recognition, you know, from the opioid issue if for no other
reason. And so this is--it's rare that Congress can do
something that will cost negative money and save thousands of
lives, but this is certainly an opportunity.
Anyway, I understand also that Representative Beyer is
interested in another round of questions, so I'll recognize him
for 5 minutes.
Mr. Beyer. Mr. Chairman, thank you very much.
Following up on our last conversation with Dr. Hamilton,
one of the things I've been impressed with is 15 years ago I
learned that when you drive through Taco Bell, if they change
the price on the--you know, the chalupa by five cents that the
data immediately goes right to Taco Bell corporate in Atlanta
or wherever it is, and they are able to figure out what the
elasticity of demand is based on that. If they can do that at
fast food restaurants, wouldn't that be nice to be able to do
that with major health issues? So thank you for pushing forward
on this.
I also want to shout out Dr. Maragakis for being part of
SATA, which is in Arlington, Virginia. You see Virginia leads
once again. And then Dr. Lee, who was part of Virginia Tech, an
outright Hokie. So--I know you're upset, but Illinois was once
part of Virginia back before the--1776, so we include you.
My bill that we talked about, which I'd love to compare to
what Ms. Hamilton--Dr. Hamilton has in terms of this national
infrastructure bill. It tries to restore trust in the CDC but
also the value of the outsourcing of the modeling because most
of the current modeling is not being done by the CDC. And a lot
of the States are hiring expensive outside consulting firms to
do this.
So, Dr. Lee, can you talk about the importance of public
health confidence in the CDC and any concerns about the
outsourcing of information?
Dr. Lee. Thank you, excellent question. And I think that,
you know--I think we've all stated over the last hour and a
half about the importance of CDC expertise. I think one of the
things that matters a lot to public health system is that the
data that we collect and use to address public health issues
are available not only to experts within CDC but that those
data become safely available to other very smart people in our
country who can help us with modeling, who can help with a
number of different approaches to using the data to best
prevent infections and, you know, help us mitigate risk for
this particular infection.
So I think that, again, I will say that without the
public's trust in our system to collect the data, we're not
going to have that for anyone else to use, so we really need to
be thinking carefully about how we can collect the data that
is, you know, accurate and valid, how we can safely share those
data with other really talented researchers in our region, in
our country, in our world to help us fight this epidemic.
Ms. Hamilton. Yes. I mean, I just----
Mr. Beyer. Thank you. We had a Joint Economic Committee
meeting yesterday with Dr. Ashish Jha, head of the Public
Health at Brown who was just terrific. And he again emphasized
that access to information is the single best tool that
Americans have to protect themselves from the virus.
Dr. Hamilton, I was impressed that less than one contact
person is identified in the contact tracing because of fears of
public trust. Can you tell me, what do they think is going to
happen? Do they think that the person they identified will be
arrested in the middle of the night?
Ms. Hamilton. You know, when we don't reach people, we
don't know what it is, right? I mean, I think that there's been
a lot of concerns that are raised when it comes to what and how
the data could be used. And unfortunately, it's--when it's not
clear exactly how data is being used and we have confusing,
mixed messaging, then there are a number of reasons, I'm sure,
why people no longer want to provide certain kinds of
information, fear of stigmatization, potential fears for loss
of work, fears that arise in terms of, you know, will their
children be able to go back to school. And unfortunately, we've
seen some really divisive things happen in this pandemic, and I
think that's why it's so important that we do hold up our
public health leaders and partners and are clear in terms of
how the data is being used so that we can really provide that
information to the public to do our job saving lives.
Mr. Beyer. That's great. Thank you very much. And,
Chairman Foster, I yield back.
Chairman Foster. Well, thank you. And before we bring the
hearing to a close, I just want to thank our witnesses for
testifying before the Committee today. I also want to thank you
personally for your concern about data-quality issues in
medicine. My daughter Christine does healthcare data analytics
for the Commonwealth of Massachusetts and regularly complains
to me about low-quality data and incomplete data that she has
to wrestle with. And so I think the things you have mentioned
toward a better path forward in our country, that Congress
should pay attention to that.
The record will remain open for 2 weeks for additional
statements from the Members and any additional questions the
Committee may ask of the witnesses. The witnesses are now
excused, and the hearing is now adjourned.
[Whereupon, at 12:16 p.m., the Subcommittee was
adjourned.]
Appendix
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