Lessons Learned From Newborn Screening & Data

More than 50 years ago, public health began addressing data collection for newborn bloodspot screening (NBS). More than 20 years ago, public health began discussing universal newborn hearing screening implementation. As I stood in front of pediatricians advocating universal hearing screening at Grand Rounds across this country, their rallying cry in the 1990s was “show us the data!” They wanted proof that it made a difference. And so early on, we began addressing data collection for that program.

Integrated data systems were just a gleam in the eye of public health, not to mention the newborn screening system software developers. Over the next dozen years, the value of integrated data systems that could access both bloodspot and hearing screening on location became widely accepted but rarely successfully implemented...

A challenge to quality improvement in newborn hearing screening programs is to understand how a screening algorithm functions in “real life”. The good news is: we have the capability and capacity to do this right, right now. Using standards-based tools, hospitals can capture pulse oximetry data or other newborn screening results, apply an interpretive algorithm, and submit the outcome and the raw data to public health. It could mean life or death for that baby who is now only a gleam in his father’s eye. We owe the youngest citizens we serve our best.

Now on to how this relates to a “learning health system”...

The time has come for acceptance of the idea of a learning health community. And public health is a natural ally that can contribute to and benefit from a learning health community. This is where progress in science, informatics, and care culture can unite to generate new knowledge as a by-product of care; refining and delivering best practices (Institute of Medicine).

Think what could be done if we could share and disseminate what is learned in the delivery of care in a timely and actionable format. Imagine reducing the lag between research and its impact on patient care from years to weeks or days. Information technology systems that provide data to improve care are at the core of OZ Systems. For twenty years, our clinical and technical experts have been crafting information systems that help those caring for children make the best decisions based on real and meaningful data.

We know data elements need to be clearly defined. Common data elements, of widespread importance to public health, can then be incorporated into information systems used at the point-of-care to engender single entry and data reuse. In a standards-driven environment, data elements can be encoded similarly within multiple information systems across multiple jurisdictions and results examined to improve protocols or customize clinical decision support for divergent populations. That is why we are laser focused on implementing standards and abiding by definitions. It matters. We can accelerate public health’s participation – with little burden on other participants – to accommodate public health’s needs.