If all kids were healthy, we might be able to get by with something called “ICD-9” — an outdated set of medical codes vital to providing care and used internationally since the 1970s to describe diagnoses and procedures.  But the truth is that not all kids are healthy and many in our care suffer from rare and chronic diseases.  

For them and their families, our nation’s repeated delays in adopting an updated code-- the International Classification of Diseases-10th Version or ICD-10--means that physicians and researchers are unable to share valuable data and updated knowledge that could improve their quality of life and, in some cases, mean the difference between a child’s life and death.  

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Let me give you some examples: for starters, ICD-9 codes do not allow physicians to specify whether a condition is in the right or left eye, hand, leg, etc.  And, even more importantly, it lumps totally unrelated diseases into common code categories, which has a seriously negative impact on care because the provider cannot make proper diagnosis and tailor treatment.   

As a physician and CEO of Nemours Children’s Health System, I hold steadfast to certain crucial principles about our clinical systems: they must promote transparency, usability, data integrity, and quality.  The updated version has long been used internationally and would be a vital step forward for patients in improving quality measurement, clinical research, and public health surveillance. ICD-10 would also allow U.S. physicians to use their full knowledge of conditions to make the correct diagnosis and describe patients’ progress. 

A broad-based coalition of nearly 25 hospitals and health care organizations are calling on Congress to end a 30-year delay in implementing ICD-10.  In 2008, after significant analysis, the Department of Health and Human Services initially planned to adopt the new code by 2011. But implementation has been postponed again and again, now slated for October, 2015. Our patients and families are counting on us. We need ICD-10 to do our jobs more effectively and efficiently, without further delay. 

Change is always hard, even when we know it will produce better outcomes. I believe that’s why many in health care are holding to ICD-9 even though this inertia is in conflict with the scientific principles on which medicine is based. 

At Nemours, for instance, we treat two rare congenital conditions, one affecting the kidneys and one affecting the brain. But in ICD-9 they are the same code. This means our researchers cannot learn the very latest methods for improving therapies and outcomes from others for two very different diseases. When you care for the sickest of a population, this is a big deal, a really big deal.  

Healthcare providers and researchers have attempted to work around this enormous roadblock by forming coalitions to study various rare conditions and recode the data so it can be shared broadly on a global scale. But no one group sees enough cases to do effective research, coding systems don’t talk to each other, and we can’t share data in a meaningful way until we’re on one common international platform. 

The decades-long delay in implementing ICD-10 has had indisputable consequences for our nation’s children and families struggling with these conditions. Our families deserve to benefit from more timely, specific information that has already been gathered by researchers around the world.   

At a time when healthcare providers and leaders across the nation are working diligently to increase access and efficiency, improve care quality, and control costs, relying on ICD-9 no longer makes sense. The promise of big data for healthcare in this country is shackled by not having the ability to capture more robust information and provide the best care for children and adults. As health care providers and as a nation, we have an obligation to our patients to insist on no further delays. 

Bailey is president and CEO of Nemours Children’s Health System in Jacksonville, Florida.