Lab Matters Fall 2019 | Page 11

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