Stories about: #PedInno13

We have a $1,000 genome. Now what?

Abstract model of the genome morphing into human shape representing clinical genomics.The Human Genome Project’s push to completely sequence the human genome ran a tab of roughly $2.7 billion and required the efforts of 20 research centers around the world using rooms full of equipment.

But that was using technology from the 1990s to early-2000s. As by a panel of genomics experts from industry and academia pointed out at last week’s National Pediatric Innovation Summit + Awards, a scientist in a single laboratory today can sequence a genome for as little as $1,000, making sequencing almost a medical commodity.

Now what? How do we go about making clinical genomics an everyday thing? The discussion left the answer to that question—and the other questions it raises—unclear. While the panelists expressed excitement about what’s possible, they cited great uncertainty among doctors, scientists, patients, payers, companies and regulators about how to make clinical genomics work.

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Children’s hospital CEOs: Pediatric health care is at a ‘tipping point’

A moment of levity as the panelists discuss health care challenges.
A moment of levity as the panelists discuss challenges in pediatric care and care delivery.
To summarize the state of pediatric health care today, Steven Altschuler, MD, president and CEO of Children’s Hospital of Philadelphia (CHOP), quoted the 1963 movie The Leopard: “Everything must change, so that everything can stay the same.”

He spoke at a panel discussion with two other children’s hospitals’ CEOs—Boston Children’s Hospital’s outgoing CEO James Mandell, MD, and Herman Gray, CEO of Children’s Hospital of Michigan (CHM)—during Boston Children’s Pediatric Health Innovation Summit + Awards on September 27 in Boston. Erik Halvorsen, PhD, director of Boston Children’s Technology and Innovation Development Office, moderated the session on the top challenges in pediatric health care and care delivery.

“For us to continue to support our missions in the traditional manner and for us to continue to advance pediatric health care, we need to change everything, including the reimbursement and research-funding models, as well as the education of our new caregivers,” Altschuler said. In his estimation, medical education has “unprepared new doctors and nurses to practice appropriate medicine in a safe, effective manner. The education is completely out of touch with reality.”

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Solving patient engagement: It’s about the data

Doctor and patient reviewing health data collected in an EMR.At the start of today’s National Pediatric Innovation Summit + Awards 2013 panel on patient engagement, healthcare journalist Carey Goldberg offered up a personal anecdote about engagement— or the lack of it—in medical care:

“I was having a minor dermatological procedure, and right before it started, I said to the doctor, ‘This really is a good idea to get this done, right?’ And she said, ‘No, actually, you don’t really need to get it done.’ And I didn’t stop the procedure. And I realized that I embodied the problem of patient engagement. It is a piece of [the health care] puzzle.”

Goldberg’s story framed a discussion that ranged from outcomes measurement to data access, from healthcare incentives to care coordination—all centered on one overriding question: How do we encourage patients to become more engaged in their own medical care?

And given the number of topics that were covered, it’s clear how complex a question that is. It’s one that engages multiple stakeholders—patients and their doctors for starters, but also insurers, policymakers and regulators, health care systems and more.

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Vertex CEO: Pediatric med is ripe for innovation pipeline, with the proper ecosystem

Jeffrey Leiden of Vertex Pharmaceuticals at at Boston Children’s Hospital’s National Pediatric Innovation Summit + Awards 2013
Vertex Pharmaceuticals CEO Jeffrey Leiden, MD, PhD, at Boston Children’s Hospital’s National Pediatric Innovation Summit + Awards 2013. (Courtesy Vertex Pharmaceuticals)

“I can’t imagine a better time to have an innovation summit in pediatric medicine. We’ve reached a tipping point in pediatrics medicine with scientific innovations converging to completely change the way we think about and treat pediatric disease,” Jeffrey Leiden, MD, PhD, president and CEO of Vertex, shared during the opening keynote at Boston Children’s Hospital’s National Pediatric Innovation Summit + Awards 2013.

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