APHL and partners: COVID aid package provides much needed funding for data modernization

Data illustration

FOR IMMEDIATE RELEASE
March 27, 2020

Washington, D.C. – Together, the Association of Public Health Laboratories (APHL), Association of State and Territorial Health Officials (ASTHO), Council of State and Territorial Epidemiologists (CSTE), Healthcare Information & Management Systems Society (HIMSS), National Association of County and City Health Officials (NACCHO), and National Association for Public Health Statistics and Information Systems (NAPHSIS) issued the following statement in response to the Coronavirus Aid, Relief, and Economic Security (CARES) Act:

We applaud members of Congress for providing $500 million for the Data Modernization Initiative at the Centers for Disease Control and Prevention (CDC) that will transform public health data systems and save lives.

The nation faces an unprecedented challenge to address the COVID-19 pandemic. Now, more than ever, it is critical to have a strong public health surveillance system that detects and facilitates immediate responses and containment of emerging health threats. The CDC—together with state, local, territorial, and tribal health departments—have taken important steps to improve the nation’s public health data infrastructure, but due to funding shortages, this has often been in a piecemeal approach.

The COVID-19 pandemic has exposed gaps in our nation’s outdated public health data systems and a workforce struggling to keep up. The United States currently relies on error-prone, sluggish and burdensome manual and paper-based data exchange methods such as faxing and phone calls to share critical public health data, especially with the health care sector. Simply put, the virus is moving faster than the data and when data move more slowly than diseases, the American people suffer. We are watching as our leaders struggle to make critical decisions without complete data.

An integrated, high-speed, networked health system—from laboratories to health care facilities to public health authorities—with fast and reliable data is necessary in order to protect Americans from COVID-19 and future health threats. Modernization is not just network upgrades; it is a commitment to building and sustaining a world-class data workforce and data systems that are ready for the next public health emergency. The funding provided in the CARES Act is an enterprise-level commitment to build a public health data superhighway of the 21st Century to speed the transmission of accurate, complete data.

We look forward to working with Congress to ensure sustained annual funding for CDC’s Data Modernization Initiative and with CDC in formulating its multi-year implementation plan.

Contact:  Erin Morton at 202.484.1100 or emorton@dc-crd.com

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New Lab Matters: Making data fly

Cover of Fall 2019 issue of Lab Matters magazine illustrating high volume of data

In today’s technology-connected world, information moves quickly. But in the world of public health, pathogens often travel faster than the data needed to diagnose, treat and prevent illness. Reporting delays and incomplete or incompatible data delay insights into pressing public health problems. The solution? Investing in public health infrastructure and resources to rapidly deliver data to public health and clinical decision makers.

Here are a few of this issue’s highlights:

Read the full issue.

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Supporting rapid exchange of public health data is urgent, crucial and laden with challenges

By Jody DeVoll, advisor, communications, APHL 

In an era when digital communications move at blazing speeds, public health laboratories still have to resort to fax, email or phone to exchange data with some partners. Yet, this is only one of the obstacles to rapid exchange of critical public health laboratory data needed for public health surveillance, emergency response and patient care.

The volume of public health laboratory data presents an obstacle in and of itself. Infectious diseases, environmental toxins, foodborne illnesses, radiological exposure, hazardous chemicals, high consequence pathogens, antibiotic resistance: public health laboratories test them all. Add to this exponential increases in volume from the expansion of advanced molecular technologies like next-generation and whole genome sequencing, and the result is terabytes of data that public health laboratories must manage, interpret, store and share.

In addition, dozens of different, stand-alone systems make programming and maintenance of laboratory reporting systems labor-intensive and costly. For example, the US Centers for Disease Control and Prevention (CDC) maintains over 100 surveillance programs, each with its own reporting system. Dari Shirazi, APHL’s health information technology manager, explains how these many systems affect public health laboratory operations: “It’s as though you have a houseful of furniture to arrange in dozens and dozens of different houses and, periodically, you receive shipments of additional furniture that also has to be arranged.”

Of course, CDC is not public health laboratories’ only data exchange partner. Other federal partners, state and local health agencies, hospitals and others also require laboratory data, and they too want it parsed and transmitted through their proprietary systems.

With all these demands, data scientists at public health laboratories face a mountain of work, yet their numbers are few. The number of graduates in public health informatics has not kept pace with demands for workers from public and private sector institutions. As a result, graduates can choose from an array of positions, and they often choose private sector jobs which tend to be higher paying and longer-term than lower-salaried, time-limited positions at a public health laboratory.

Huge data volumes, a multitude of reporting systems and a shortage of public health data scientists make data exchange a laborious, costly and frustrating enterprise for public health laboratories. However, the implications extend beyond laboratories to the populations the data is intended to protect, in other words, us. According to Peter Kyriacopoulos, APHL’s senior policy director, “We are fast approaching the confluence of events on the management of public health data that threatens the very relevance of governmental public health. The volume of data generated by new laboratory technologies adds to the burden of over 100 inefficient data reporting systems that each have been designed to move specific information to a point at CDC, which constrains the utility of that information.

Fortunately, there are signs of change. Four national health organizations — APHL, the Healthcare Information and Management Systems Society (HIMSS), the Council of State and Territorial Epidemiologists (CSTE) and the National Association for Public Health Statistics and Information Systems (NAPHSIS)  – launched the Data: Elemental to Health campaign calling for a $1 billion investment in congressional funding over the next decade to modernize public health data/IT systems and develop a skilled workforce of data/IT specialists. Under the plan, state, local, tribal and territorial health departments would receive direct funding for these purposes through the CDC.

Over the last six months, the campaign has convened stakeholders, made the case for improved data systems to congressional and administration staff, appeared before the House Appropriations Subcommittee, hosted Hill briefings and organized a Day of Digital Action. Already there are results:

  • The House appropriations bill includes $100 million in fiscal 2020 for public health data systems and workforce modernization
  • The House LIFT America Act authorizes $100 million per year for five years to develop public health data systems and train staff
  • The Senate Saving Lives Through Better Data Act authorizes $100 million per year for five years for systems and people
  • The Senate Lower Health Care Costs Act authorizes “such sums as may be necessary” over five years to modernize data systems.

How would legislation initiated through the campaign support public health laboratories? First and foremost, it would help them to strengthen their LIMS. Shirazi explains, “A LIMS is a living, breathing thing that has to grow with lab needs. These needs change every year as the lab takes on new and novel types of testing.” Building LIMS capacity would enable laboratories to expand capability for data capacity, exchange and analytics; eliminate manual entry of test results; and provide secure, instantaneous communication of results to health partners. In addition, legislation initiated through the campaign would underwrite laboratory systems for exchange of electronic health records, National Notifiable Disease Surveillance System data, vital health records (e.g., notices of births and deaths) and other public health surveillance data.

Looking forward, the US would do well to complement the advances initiated under the Data: Elemental to Health campaign with a data transfer solution that consolidates all public health data systems into one. Kyriacopoulos notes that: “the creation of a single reporting site, that multiple data providers and users can report to and receive information from, would be a significant improvement that would allow for the efficient and comprehensive use of this data throughout the federal/state/local public health system.”

 

Photo credit: James Marvin Phelps

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New Lab Matters: The ABCs of PFAS

New Lab Matters: The ABCs of PFAS | www.APHLblog.org

First discovered in the 1930s, per- and polyfluoroalkyl substances (PFAS) now pervade almost every aspect of modern life. In fact, PFAS compounds are found in everything from dental floss to cookware. But human exposure to PFAS comes at a cost, and as old compounds are removed from production, new compounds take their place. So how does a public health laboratory handle this challenge with limited resources? As our feature article shows, by establishing new public-private partnerships.

Here are just a few of this issue’s highlights:

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Gordon Research Conference on Craniofacial Morphogenesis and Tissue Regeneration (February 11 – 16, 2018): Licia Selleri & Ophir Klein

  Gordon Research Conference on Craniofacial Morphogenesis and Tissue Regeneration (February 11 – 16, 2018): Licia Selleri & Ophir Klein   Posted August 22, 2018 by post-info As part of its mission to encourage engagement

History of the word ‘data’

Sandra Rendgen describes the history of “data” the word and where it stands in present day.

All through the evolution of statistics through the 19th century, data was generated by humans, and the scientific methodology of measuring and recording data had been a constant topic of debate. This is not trivial, as the question of how data is generated also answers the question of whether and how it is capable of delivering a “true” (or at least “approximated”) representation of reality. The notion that data begins to exist when it is recorded by the machine completely obscures the role that human decisions play in its creation. Who decided which data to record, who programmed the cookie, who built the sensor? And more broadly – what is the specific relationship of any digital data set to reality?

Oh, so there’s more to it than just singular versus plural. Imagine that.

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PLOS Biology in the media – April

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Protocols: The Devil is in the Details

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Anaesthesia Response, Controlling Cas9, and How to Use Github: the PLOS Comp Biol January Issue

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Episode 3: Managing scientific data feat. Tracy Teal

Good data management is so important to science, but learning how to use tools for handling data is a significant time investment. In this month’s PLOScast, Elizabeth Seiver speaks with Tracy Teal, the Executive Director