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The next step for healthcare big data: pediatrics

The pediatrics specialty faces many unique challenges when it comes to caring for patients. A panel of experts believes big data can help, including with rare diseases.

The next step for pediatric care is finding a way to use healthcare big data.

At least that's the word from a panel of experts at the Global Pediatric Innovation Summit in Boston. The reason big data will become valuable to pediatrics is because the specialty faces unique challenges that require different solutions.

Pediatrics is well established as a specialty in healthcare: Babies are seen by a pediatrician, children's hospitals provide focused care, other medical centers have their own pediatric ERs and small-sized pediatric medical equipment is sold by vendors. Big data following this trend is a nod to the unique challenges of the field, the panelists said.

For example, when it comes to pediatrics, often these patients aren't making decisions for themselves; instead, their parents decide, which can be a daunting task.

"Our goal is to help [the parents] make decisions in a more confident and robust way and in the best interests of the end patient," said Jackson Wilkinson, founder, president, and head of product and engineering at Kinsights Inc. -- an  advice-sharing network for parents based in San Francisco.

And this juncture is where healthcare big data can help.

"Insofar as we're able to identify pain points in the care process and bring the right people into the fold so they can understand the issues that the family is going through, in the best interest of the patient, of the child, that's really where the data comes in handy," Wilkinson said.

Rare diseases offer prime ground for big data

Furthermore, healthcare big data could also help parents make decisions when their child is dealing with a highly complex or unusual disease, said panelist Andrew Wiesenthal, M.D., director of the healthcare practice at Deloitte Consulting LLP, and a member of the federal Health IT Standards Committee.

Wiesenthal said healthcare big data could help answer questions such as: "What's the aggregate experience of all the other parents of kids with unusual problems?" and "What did physicians do when this condition came up and what worked?"

For families, more data helps juggle the options

John Halamka, CIO at Beth Israel Deaconess Medical Center in Boston, is a proponent of healthcare data. When his wife fought stage 3 breast cancer, big data helped Halamka and his family explore possible treatments.

"Big data really helps us understand our options," Halamka said in an interview with SearchHealthIT. "It was so much easier to understand as a family what our choices were and make rational choices because we had data and examples of other patients like us."

Even then, answers can be difficult because the numbers of pediatric patients with a rare or complex disease are small, Wiesenthal said. "But if you aggregate across the universe of those patients, even just in the United States … now you're onto something."

He added that it's important for the data flow and interpretation of the data to be in "parent-interpretable terms" so that they can make smart decisions in the interest of their child.

Let us know what you think about the story and pediatrics big data; email Kristen Lee, news writer, or find her on Twitter @Kristen_Lee_34.

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This was last published in November 2015

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