Solving patient engagement: It’s about the data

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:

“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.”

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? Read more.

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

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. 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. Read more

Industry-researcher partnerships accelerate innovation, but funding remains Achilles’ heel

Early-stage researchers face a stark economic reality: decreasing available dollars. To address this barrier, a panel of experts at Boston Children’s Hospital’s National Pediatric Innovation Summit + Awards 2013 discussed the shifting of funding from venture capitalists to larger medical device, informatics and pharmaceutical companies.

Alan Crane, general partner at venture capital (VC) firm Polaris Partners, said it is a very difficult time for early-stage life sciences innovation, especially with respect to resource generation. “There were periods when innovation was stronger,” he said. “In 2000, there were 1,000 VC firms, now there are 350. Also, the size of the funds has decreased substantially, particularly for early-stage life sciences. While some biotech firms are going public, this trend hasn’t trickled to the earlier stages.” Read more.

MIT’s Langer shares lessons learned on his innovation journey

When James Mandell, MD, outgoing CEO of Boston Children’s Hospital, introduced keynote speaker Robert Langer, PhD, at the National Pediatric Innovation Summit + Awards, he shared one of Langer’s favorite quotes. “When scientific literature says something isn’t possible, you just have to create possibilities that don’t exist.”

Langer, the David H. Koch Institute Professor at the Massachusetts Institute of Technology (MIT) and the most cited engineer in history, walked the audience through the trials and tribulations he encountered in his four-decade career as an innovator.  Read more.

Pediatric Innovation Summit: Top 5 Takeaways

Boston Children’s Hospital convened the National Pediatric Innovation Summit + Awards 2013 with an ambitious goal: to bring together thought leaders to address the toughest challenges in pediatric health care. During the two-day summit, a series of panels and town hall discussions sparked dynamic dialogue.

While the summit was designed as a forum for ongoing discussion and relationship building, five key takeaways have emerged.   Read more.

Autism at the cusp: Better metrics and objective measures needed

There’s been an explosion of scientific research in autism—from mouse models of genetic syndromes involving autism to culturing neurons from stem cells derived from patients’ skin to tracking EEG patterns in infants whose brothers or sisters have autism.

So I expected yesterday’s panel on Piecing Together the Autism Puzzle, part of Boston Children’s National Pediatric Innovation Summit, to be about the science. Instead, the conversation turned to the insurance, public health and social justice aspects of autism.

Take, for example, the rising incidence of autism, which the CDC places at 1 in 88 (and 1 in 54 in boys). Panelist Ami Klin, PhD, director of the Marcus Autism Center at Children’s Healthcare of Atlanta, noted that between the CDC’s 2002 and 2008 reports on autism, there was close to a 101 percent increase in autism prevalence in Hispanics and a 96 percent increase in blacks.  Read more.

Boston Children’s, Brigham and Women’s receive $6 million for genome sequencing in newborns

BOSTON, Mass. —Sept. 4, 2013—Parents of some Boston-area newborns will have a rare opportunity to have their baby’s DNA completely analyzed as part of the first-ever randomized trial to explore the benefits and risks of genome sequencing in this age group. The five-year study, funded by a $6-million grant from the National Institutes of Health to Boston Children’s Hospital and Brigham and Women’s Hospital, will assess newborns’ risk for future diseases and how that information affects the baby’s medical care, and the relationship between the parents, baby and pediatrician.   Read more.

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

As 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. Read more.

Pharmacogenomics: One size doesn’t fit all

In 2009, The New England Journal of Medicine reported the case of an otherwise healthy 2-year-old boy in Canada who died after surgery. He had received a codeine dose in the recommended range, but an autopsy revealed that morphine (a product of codeine metabolism) had built up to toxic levels in his blood and likely depressed his breathing. Genetic profiling revealed him to be an “ultrarapid codeine metabolizer,” due to a genetic variation in an enzyme known as CYP2D6, part of the cytochrome P-450 family.  Read more.