FEATURE
On September 3, The Washington Post reported that health officials are “sounding the alarm” about rising
rates of congenital syphilis—a preventable disease that leads to stillbirth or neonatal death for 40% of affected
babies and potential blindness or other serious health consequences for survivors. According to a US Centers
for Disease Control and Prevention (CDC) epidemiologist quoted in the article, “There’s a system failure
somewhere. It’s either at the healthcare level or public health level, but somehow we are failing these women.”
One problem? Almost all the data cited in the article dates to 2017.
“The diseases are moving faster than the
data,” said Michael Iademarco, MD, MPH,
repeating a statement common in public
health today. He said, “All you have to do
is read [CDC’s] Morbidity and Mortality
Weekly Report and you’ll see that there’re
lots of reports—robust, scientifically
sound, public health reports—but they
rely on data from two, three or even five
years ago. And that’s not quick enough.
For something like the opioid crisis,
looking at data from even two months ago
might not be timely enough.”
On top of reporting delays, public health
data are often incomplete or difficult to
electronically intermingle with other
data to gain insights into pressing public
health problems. The Missouri State Public
Health Laboratory, for example, has a
high-volume HIV/STD specimen submitter
that, without changes to its standard
electronic test order, is unable to note on
its electronic test request form whether
or not the patient is pregnant—a piece of
missing information with direct relevance
for preventing congenital syphilis, as well
as perinatal HIV transmission.
PublicHealthLabs
@APHL
In fact, the antiquated state of public
health data systems is well known;
since 2014 Iademarco, director of CDC’s
Center for Surveillance, Epidemiology and
Laboratory Services, has been helping to
implement a strategy to achieve “newer,
faster, smarter, better” public health
surveillance.
“We’ve accomplished a lot in the past
five years,” he said. “But it’s just a start. ...
Congress is looking at this and agrees we
need data modernization.”
Just this past spring, Congresswoman
Rosa DeLauro (D-CT), chair of the House
Appropriations Subcommittee on Labor,
Health and Human Services (HHS), and
Education, included $100 million in this
year’s House-passed HHS funding bill to
support what some are calling a public
health data transformation. And in
June, Senators Tim Kaine (D-VA), Johnny
Isakson (R-GA) and Angus King (I-NH)
introduced the Saving Lives Through
Better Data Act (S.1793), authorizing CDC
to continue improvements to its own data
systems and to fund efforts to modernize
APHL.org
public health data systems in state,
local, tribal and territorial public health
agencies.
In a statement to Lab Matters, DeLauro
said, “We must move away from outdated,
paper-based [public health] systems to
create a true digital network capable
of transferring data in real time, which
will connect resources to make common
investments for the future. CDC currently
stores data in 120 silos, limiting data
sharing. The enterprise effort in our
bill will have benefits across the public
health spectrum including foodborne
illness, influenza, antibiotic resistance,
lead poisoning, opioids and Zika, and will
bring CDC and public health into the 21st
century with shared data platforms that
are interoperable, accessible, and [able to]
provide data in a way that supports timely
action.”
APHL and partners are pushing for a
billion-dollar federal investment—$500
million for CDC and $500 million for
CDC grants to US jurisdictions and Tribal
nations—to be paid out in $100 million
Fall 2019 LAB MATTERS
9