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

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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