Stories about: Innovators’ stories

CareAline: A mother’s road to SXSW

The CareAline wrap, modeled by Lochlan Fitzgerald
The CareAline wrap, modeled by Lochlan Fitzgerald. Below, the CareAline sleeve.

Our daughter, Saoirse, was diagnosed with cancer when she was 11 months old. Her care, safety and comfort were our first priorities. When she had a PICC line and later a central line placed to infuse drugs and fluids, we saw a need for a better way to keep these lines safe and secure without using skin-damaging tape and irritating mesh netting. Saoirse was tugging at her lines and trying to pull off the tape, so I handmade a fabric sleeve for her PICC line and a chest wrap for her central line, and she went back to playing and being a kid.

Initially we figured that would be the end of it.

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SXSW Interactive 2015: Our future selves, a maturing health tech industry and why failing is productive

SXSW Impact Pediatric HealthJudy Wang, MS, is a program manager in the Telehealth Program at Boston Children’s Hospital.

In 2012, when I attended the South by Southwest (SXSW) Interactive conference for the first time, health tech was still an emerging field. It was the first year the world’s leading conference for emerging technology and digital creativity made any effort to include health tech programming, and the first time its Accelerator pitch event included a category for health tech startups.

Only three years later, SXSW Interactive (March 13­–17, 2015) has grown to include almost 50 events related to health and medical technologies. Martine Rothblatt, CEO of the biotech company United Therapeutics, gave a keynote titled “AI, Immortality and the Future of Selves” that was both inspiring and provocative. She spoke to a world in which our 24/7 selves are increasingly being captured digitally. Audience questions captured by Twitter pondered the ethical implications of what Rothblatt called “mind clones”: future mechanical beings digitally programmed with our mannerisms, habits and memories.

This year also featured the Impact Pediatric Health pitch competition, captured in this Storify.

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How Skype and FaceTime inspired remote care for home-ventilated patients

Casavant telemedicine home ventilationFrom a series on researchers and innovators at Boston Children’s Hospital. At left, David Casavant demos TeleCAPE at a Boston Children’s Hospital Innovators Showcase.

It is said that necessity is the mother of invention, so when David Casavant, MD, observed his teenagers routinely using FaceTime and Skype to connect with friends, he had a lightbulb moment. Could videoconferencing help him support his patients—children and young adults who require mechanical ventilation in their homes?

“It just seemed obvious,” says Casavant, a physician in the Boston Children’s Hospital’s CAPE (Critical Care, Anesthesia and Perioperative Extension & Home Ventilation) program, part of the Division of Critical Care Medicine. “In my work we are always weighing the risk versus the benefit to the patient. It’s easy for ambulatory patients to swing by their primary care office, get a prescription or go for an x-ray, but that’s not the case for patients who have to have their oxygen, their suction or their ventilator. If you don’t have to put them on the road you are better off not to.”

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Can the collaborative economy work in health care?

Airbnb Uber model health care
Airbnb and Uber have disrupted the hotel and taxi industries by finding and tapping unused assets. What's in store for medicine?

David Altman is manager of marketing and communications in Boston Children’s Hospital’s Technology and Innovation Development Office.

Robin Chase, co-founder of Zipcar and current CEO of Buzzcar, envisions collaboration as the future of the world’s economy. Her concept, PeersIncorporated, brings excess capacity of consumer goods or assets—such as unused time or untapped data—to online platforms and apps where consumers (“peers”) provide insights that drive business growth.

Speaking recently at Boston Children’s Hospital, Chase elaborated on the concept of excess capacity, which is the basis of Buzzcar. Typically, families pay an average of $9,000 a year—$25 a day—for cars they use only 5 percent of the time. That unused time represents value and economic potential. Buzzcar’s platform harnesses that unused capacity, allowing multiple peers to supply and book cars on an easy-to-use website at a low cost.

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Meet the researcher behind “heart on a chip”

Pu and wife and waterfallFrom a series on researchers and innovators at Boston Children’s Hospital.

With all of the recent buzz about precision medicine, it’s no wonder that William Pu, MD is gaining recognition for his innovative application of stem cell science and gene therapy to study Barth syndrome, a type of heart disease that severely weakens heart muscle. Pu’s research was recently recognized by the American Heart Association as one of the top ten cardiovascular disease research advances of 2014.

Can you describe your work and its potential impact on patient care?

We modeled a form of heart-muscle disease in a dish. To do this, we converted skin cells from patients with a genetic heart muscle disease into stem cells, which we then instructed to turned into cardiomyocytes (heart-muscle cells) that have the genetic defect. We then worked closely with bioengineers to fashion the cells into contracting tissues, a “heart-on-a-chip.”

How was the idea that sparked this innovation born?

This innovation combined the fantastic, ground-breaking advances from many other scientists. It is always best to stand on the shoulders of giants.

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A link between cystic fibrosis and arsenic poisoning?

boys playing in arsenic-endemic area of Bangladesh

Since its causative gene was sequenced in the 1980s, cystic fibrosis (CF) has been the “textbook” genetic disease. Several thousand mutations have been identified in the CFTR protein, which regulates the flow of chloride in and out of cells. When CFTR is lost or abnormal, thick mucus builds up, impairing patients’ lungs, liver, pancreas, and digestive and reproductive systems, and making their lungs prone to opportunistic infections.

But new research could add a chapter to the textbook, pinpointing an unexpected environmental cause of CF-like illness. A study reported in the February 5 New England Journal of Medicine found that people with arsenic poisoning have high chloride levels in their sweat—the classic diagnostic sign of CF.

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A simpler way to measure complex biochemical interactions

DNA nanoswitches electrophoresis Wesley Wong PCMM Wyss Institute
Do you really need complex high-end analytical equipment to study molecular interactions, or will an electrophoresis gel do the trick?

Life teems with interactions. Proteins bind. Bonds form between atoms, and break. Enzymes cut. Drugs attach to cell receptors. DNA hybridizes. Those interactions make the processes of life work, and capturing them has led to many medical advances.

“Determining which molecules interact, and measuring the strength of these interactions is fundamental for many areas of research, from drug discovery to understanding the mechanisms underlying disease,” says Wesley P. Wong, PhD, a biophysicist with Boston Children’s Hospital’s Program in Cellular and Molecular Medicine (PCMM), Harvard Medical School and the Wyss Institute for Biologically Inspired Engineering.

Technologies abound for studying molecular-level interactions quantitatively. But most are complex and expensive, requiring dedicated instruments and specific training on how to prep samples and run the experiments.

Wong and his team, including graduate student Mounir Koussa and postdoctoral fellows Ken Halvorsen, PhD (now at the RNA Institute) and Andrew Ward, PhD, have created an alternative method that democratizes the process. Using electrophoresis gels, found in just about any biomedical laboratory, they’ve developed what they call DNA nanoswitches. These switches let researchers make interaction measurements without complex instruments, at a cost of pennies per sample.

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Overturning dogma to open the black box of DIPG

pons DIPG brain tumor brainstem glioma

You can’t advance the care of a disease that you can’t study. And for 40 years, that was the case with a rare, uniformly fatal pediatric brain tumor called diffuse intrinsic pontine glioma, or DIPG.

DIPG isn’t like most brain tumors. Rather than forming a solid mass, it weaves itself among the nerve fibers of the pons—a structure in the brain stem that controls vital functions like breathing, blood pressure and heart rate—making it impossible to biopsy. At least, that’s been the dogma.

“DIPG is the only tumor that historically has not been biopsied, because it’s found in such a critical place in the brain,” says Mark Kieran, MD, PhD, director of the Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “In the 1970s and ‘80s, children with DIPG who underwent biopsy had multiple neurologic complications, so the dogma became ‘no biopsies.'”

As a result, research was stalled by a lack of available tumor tissue to study. To address this, Kieran and his colleagues Nalin Gupta, MD, and Michael Prados, MD, PhD, of the University of California, San Francisco, launched a new clinical trial of DIPG in 2012. The trial is leveraging advances in microsurgery and genomics to give researchers their first peek into the molecular nature of DIPGs.

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Intelligent ICU monitoring for patients in status epilepticus: BurSIn

The BurSIn system, in development, interprets EEG data along several key parameters and accurately identifies burst and suppression patterns.
The BurSIn system, in development, interprets EEG data along several key parameters and accurately identifies burst and suppression patterns.

Status epilepticus, a life-threatening form of persistent seizure activity in the brain, is challenging to treat. It requires hospitalization in an intensive care unit, constant monitoring and meticulous medication adjustment. An automated, intelligent monitoring system developed by clinicians and engineers at Boston Children’s Hospital could transform ICU care for this neurological emergency.

Typically, children in status epilepticus are first given powerful, short-acting seizure medications. If their seizures continue, they may need to be placed in a medically induced coma, using long-acting sedatives or general anesthetics. “The goal,” explains biomedical engineer Christos Papadelis, PhD, “is to supply enough sedating medication to suppress brain activity and protect the brain from damage, while at the same time avoiding over-sedation.”

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Health care in a hyper-connected world: Cisco’s Carlos Dominguez

Part of a series of videotaped sessions from Boston Children’s Hospital’s Global Pediatric Innovation Summit + Awards 2014.

Carlos Dominguez is a technology evangelist, social media maven and a Senior VP at the IT company Cisco Systems, Inc. In this animated keynote presentation, he poses the question: how can health care organizations innovate in a world transformed by the web, social media and mobile phones, where “distance is dead,” knowledge is totally democratized and kids are born digital? Innovation isn’t luck, he contends, it’s a discipline that should work its way into an organization’s DNA.

Click here for full coverage of the Global Pediatric Innovation Summit. Videos are also available on YouTube.

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