Answers to crucial questions in pediatric health revealed through use of big data


Childhood is a universal human condition. Health related events and behaviors established during these formative years set a pervasive course that defines our health and wellbeing for a lifetime.

While there is much we understand about healthy behaviors, there is still work ahead to help children and families fully adopt the positive behavior changes that will improve their health and change their lives.

Many chronic conditions, such as diabetes and heart disease, can be traced back to behaviors and health status in childhood. By the time people reach adulthood, they not only are set in their ways, they often arrive with the baggage of years of poor health behaviors.

If we as pediatricians and pediatric specialists can help break this cycle, we would be able to create a generation of truly comprehensively healthier children who mature into healthy adults. They, in turn, would pass on positive health behaviors to their children, which ultimately would permanently lift the overall health of our population.

This remarkable turnaround will require adequate resources, particularly in strengthening our commitment to the crucial area of pediatric research. Consider the current allocation of precious research dollars. Adult health receives an estimated ninety three percent, leaving only seven percent to be spent on children, despite the untold benefits that would flow from earlier intervention in preventing childhood disease and promoting healthier lifestyles.

Our challenge is not just resources. There have been other obstacles to advancing our evidence base. The idea of making children the subject of medical research makes many people uncomfortable, so it is crucial that we find novel ways to better communicate the value of child health research to our population. Through a labor of love and collaboration, Nemours Children’s Health System, along with seven other partner children’s hospitals and medical centers, have leveraged their extensive electronic health records to create a powerful new tool for pediatric research.

Collectively, our eight organizations have assembled a unified data set of 6.2 million patient records that can be tapped to answer medical questions that have challenged families and providers for decades. These healthcare institutions have put their individual interests aside to achieve the greater goal of helping children. This remarkable tool gives us the ability to gather enormous and previously inaccessible amounts of data to help design care that can save children’s lives. One health system alone could never have accomplished this.

The data bank, known as PEDSnet (funded in part by the congressionally chartered Patient-Centered Outcomes Research Institute) is already beginning to produce results. In a new study, published this week in Pediatrics, research led by Nemours Children’s Health System leveraged information from more than half a million children in this database to demonstrate that obesity is the only preventable risk factor for asthma.

To put this new PEDSnet finding into perspective, consider the potential impact: If we prevent obesity in children, we could potentially prevent 800,000 kids in the U.S. from developing asthma. This is the largest-ever study of its kind that is a cross section of the U.S. and that estimates the attributable risk. But it wouldn’t be possible without collaboration and quality medical records data.

To understand the potential significance of PEDSnet, it is important to acknowledge how much we do not know. For example, we still do not know whether every child with appendicitis actually needs surgery, whether certain cancer medications will work well for certain kids, or whether we have the best evidence for prescribing antibiotics for common childhood infections, like pneumonia or strep throat. Instead of scientific evidence, we’re left guided by expert opinion, tradition and good faith. Our children deserve better.

The gold standard in research is to conduct large, randomized clinical trials. However, many questions can be answered in a shorter time and with less expense by analyzing large quantities of currently available data. Further, access to such large data sets, known as Big Data, will allow us to design more effective, efficient and focused randomized trials when we need them. PEDSnet is a wise investment. It allows our research dollars to have more impact on more children and bring more benefit to society.

Nemours and its PEDSnet partners are poised to achieve the best health outcomes and improve the quality of life for all children, by harnessing the power of a nation of pediatric caregivers working hand-in-hand with our patients and families. The dataset is already being tapped to answer other questions in pediatric health that have perplexed the field for years–and is doing so with efficient use of time and resources.

As this work demonstrates, pediatric research is at a pivotal moment in potentially discovering so much more about children’s health that will enable us to reverse the trends in adult health outcomes and life expectancy.

We cannot continue to disproportionately focus our medical resources on end of the life care and expect to solve huge, preventable problems that plague us. We must increase our resources in children’s health where we can have a better return on our investment. Only through a concerted focus on pediatric research will we permanently alter the health of our society and create a sustainable path toward better health for all of us.

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