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How IT collaboration changes prospects for high-risk babies

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Hundreds of babies are born addicted to drugs every day. According to estimates from the National Council on Drug Abuse, 32,000 babies were born with neonatal abstinence syndrome between 2004 and 2014—that’s one baby every 15 minutes.

Infants with neonatal abstinence syndrome (NAS) experience intense symptoms during periods of withdrawal and are often completely inconsolable. In extreme cases, complications can include respiratory problems, feeding difficulties, GI disorders, seizures or death.

Caring for these complex newborns poses a unique challenge, but during the last four years, healthcare providers have made significant progress understanding NAS. Identifying NAS patients is half the battle, and diagnostic tools such as the Finnegan Neonatal Abstinence Scoring Syndrome (FNASS) and heightened cognizance of symptoms has been massively effective.

The other problem is that babies haven’t been issued social security numbers when they’re discharged from the hospital. (Sometimes they aren’t even named yet.) Once the hospital bracelets are removed, babies are separated from their medical data and without an SSN the separation from their data is even more significant. Patient histories and treatments get buried in EHRs and, over time, forgotten. Most large and specialized health systems that treat NAS babies in NICU environments don’t send alerts to small, rural practices. These rural care teams might not know they are treating a NAS patient—that needs extra monitoring and care—unless the caregiver discloses the medical history.

What we do know: the health effects of drugs and withdrawal can be a lifelong struggle. For example, children whose mothers used IV drugs may need to undergo regular testing for Hepatitis C throughout their childhood. They may experience developmental issues and have a higher incidence of conditions like ADHD. And we’re only beginning to comprehend the long-term complications.

Recently, a handful of states have begun to seriously address NAS through the use of collaborative technology. Kentucky is reporting promising early results, underscoring why care collaboration impacts clinical practice and patient outcomes.

In early 2019, the Kentucky Hospital Association and the Kentucky Office of Rural Health announced the rollout of a statewide care coordination network that enables healthcare providers to identify high-risk patients—a category that includes infants at high-risk for NAS and other complications.

Kentucky has one of the highest rates of opioid use in the country and saw a 37-fold increase in NAS cases between 2000 and 2013—from 0.4 cases per 1,000 births to 15.0 cases per 1,000 births—and in some areas, like the Highlands Health System in Prestonsburg, one-fourth of all babies are born with NAS.

Kentucky’s care coordination network alerts providers to high-risk infants in utero or within a couple of hours after they’re born. It does this by cross-referencing maternal and prenatal data with other insights—high-risk factors, social determinants and clinical measurements—so they can be screened and treated quickly. The more information that providers have, the better they can tailor their treatment plans and care coordination to the patient’s need.

Most NAS babies require special medication assisted treatment (MAT), so if a baby is diagnosed quickly and begins treatment, their length of stay in hospital settings is significantly reduced. Additionally, babies aren’t given unnecessary CAT scans or expensive tests that likely have no bearing on their condition.

The long-term benefits of using a collaborative network to share data are equally important.

When information about a baby’s health history is pushed out across a network, all network partners in participating care settings have access to the data. When a patient presents in a new care setting, pertinent information such as a history of NAS, seizures or emergency department (ED) visits is pushed to the point of care. This is important in rural areas, like Appalachia, where provider resources and ED staff cannot meet the demand of their patients.

Instead of wasting valuable time searching extensive patient records or calling hospitals, pediatricians know within moments of a child’s intake that they have a history of NAS. If a five-year-old child is experiencing symptoms such as jaundice, fatigue or hives, the provider is prompted to inquire about whether the child was screened at age 3 for Hepatitis C. If necessary, the provider can refer the patient to a specialist.

While care coordination initiatives like Kentucky’s are still in the early stage, providers have already reported that receiving detailed data—and not having to pull it from an overwhelming database—is making a difference.

Kentucky’s approach demonstrates that the smallest piece of information about a patient can have a profound impact on care. Data can give a voice to those who don’t have one and advocate for their wellbeing. By sharing data through smarter pathways, we’re opening up new opportunities for better care, better outcomes and better lives. We still have a long way to go when it comes to treating NAS patients and their families, but these programs are a promising start to caring for the smallest and most vulnerable patients in our system.

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