CHOC Heart Patients Among First to Experience Clinic of the Future

A pilot program at CHOC is giving cardiac patients and their families more peace of mind. Launched by pediatric cardiologist and CHOC’s chief intelligence and innovation officer Dr. Anthony Chang, the CHiP (Cardiopulmonary Health intelligence Program) clinic provides home monitoring equipment to families for the purpose of tracking patients’ vitals, such as blood pressure and oxygen saturation. Through telepresence, families can also connect with their physicians without leaving their homes.

Dr. Anthony Chang
Dr. Anthony Chang, pediatric cardiologist and chief intelligence and innovation officer at CHOC

“Patients and families feel more comfortable outside the clinical setting. But when away from the hospital, parents can feel very anxious about their children’s health and well-being,” explains Dr. Chang. “Our CHiP clinic ensures continuity of care, while providing great comfort to parents who know they can connect with their physicians without visiting their offices.”

CHiP is based on another innovative idea from Dr. Chang: the iClinic. According to Dr. Chang, the iClinic is a philosophy of leveraging emerging technologies to help create efficiencies, improve workflow and the continuity of care for patients by bringing CHOC expertise to patients’ homes.  The ultimate goal is improving quality care and positive outcomes for patients.

CHOC Children's Heart Institute

There are five key components of the iClinic, all starting with the letter “I”:

  • Instantaneous – Instead of periodic measurements at home, monitoring devices can measure at any time.
  • Intermittent – Instead of being limited to scheduled visits, virtual visits can happen at any time. These virtual visits can include educational sessions, in addition to wellness checks.
  • Individual therapy – Precision medicine is built into the iClinic, including genomics and pharmacogenomics, to find the medicine or treatment best suited for the patient.
  • Intelligent data-driven medicine – All data is compiled and analyzed to make the best possible decisions, including personalized medicine and drug discovery.
  • Intuitive interactions – Through telepresence and the ability to provide instantaneous data with feedback, the iClinic contributes to an experience that feels authentic and intuitive.

Dr. Chang envisions rolling the “clinic of the future” to other specialties at CHOC, beyond CHiP.

“This is the clinic of the future. It is inclusive of wearable devices, avatars, artificial intelligence and genomic medicine. But it’s important to note we’re not using the technology for the sake of just using fancy gadgets.  We are leveraging emerging technologies to really change how we deliver care in the best possible way,” explains Dr. Chang.

Providers who are interested in piloting a similar program at their institutions are free to contact Dr. Chang at achang@choc.org.

ROSA Robot Assists in CHOC Patient’s Successful Epilepsy Surgery

Five-year-old Ian Higginbotham recently enjoyed his best summer yet.  He experienced his first family vacation. He learned to swim and ride a bike. He got himself ready for kindergarten.  These are milestones most kids and parents, alike, eagerly welcome.  But there was a time when Ian’s parents weren’t certain their son, who was born seemingly healthy, would enjoy such happy pastimes.

Ian began talking and walking in his sleep as a toddler.  When the episodes, including night terrors, increased in frequency and severity, his mom Lisa made an appointment with the pediatrician.  One day, Lisa knew something just wasn’t right and didn’t want to wait for the appointment to get Ian checked out.  She and her husband Derek took him to the Julia and George Argyros Emergency Department at CHOC Hospital.  To her surprise, doctors diagnosed her son with epilepsy.    Ian’s “sleepwalking” and “night terrors” were actually seizures.

The family was referred to CHOC’s comprehensive epilepsy program.  A national leader in pediatric epilepsy care, CHOC’s comprehensive epilepsy program offers cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions.  CHOC was the first children’s hospital in the state to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, signifying the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

CHOC Children's

Ian’s neurologist Dr. Andrew Mower suspected he was experiencing complex partial seizures, which was confirmed by video EEG monitoring.  Complex partial seizures start in a small area of the temporal or frontal lobe of the brain, and quickly involve the areas of the brain affecting alertness and awareness.  The pattern of Ian’s seizures suggested they were originating from the right frontal lobe.  Dr. Mower knew Ian and his family were in for a tough journey.

“I really don’t think the general public understands the impact epilepsy has on a child and his family.  Its effects are multifaceted and extensive.  Our team’s goal is to reduce or eliminate our patients’ seizures, helping improve their quality of life,” explains Dr. Mower, who placed Ian on a series of medications.

The medications reduced Ian’s seizures, but did not control them.  Dr. Mower was concerned about the seizures affecting Ian’s development, and presented his case to the epilepsy team.   The multidisciplinary team agreed Ian was a candidate for epilepsy surgery.  For children who fail at least two medications, surgery may be considered early in treatment versus as a last resort.  Surgery can result in an improvement in seizure control, quality of life, and prevent permanent brain damage.  Ian’s surgery was going to be performed by CHOC neurosurgeon Dr. Joffre Olaya.

While the thought of surgery was frightening to Lisa and her husband, they were confident in the team and comforted to know their son was going to benefit from innovative technology, like the ROSA™ Robot. Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm.  The computer system offers 3D brain mapping to aid surgeons in locating the exact areas they need to reach and planning the best surgical paths.  The robotic arm is a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

Dr. Olaya used ROSA to accurately place electrodes in the area of Ian’s brain suspected to be the source of his seizures.  By using the robot, Dr. Olaya avoided performing a craniotomy.

“ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room.  It reduces blood loss and risk of infections.  Patients tend to recover faster than they would if they had craniotomy,” says Dr. Olaya.

Lisa was amazed at the outcome. “I couldn’t believe how great Ian looked after the placements of the electrodes with ROSA.  He wasn’t in any pain, there was no swelling.  It was wonderful!”

She and her husband were also amazed at how well Ian did following his epilepsy surgery.

“We got our boy back,” says Lisa. “There were no more side effects from medication and, more importantly, no more seizures!  He started developing again and doing all the things a child his age should do.”

Ian’s care team isn’t surprised by his recovery.

“Children are resilient, and their brains are no different.  In fact, the plasticity of a young brain allows it to adapt to changes and heal more easily than an adult brain,” explains Dr. Mower.

Learning to ride a bike and swim were among the first of many milestones Ian quickly reached following surgery.  He enjoys playing with his younger brother and his friends.  And, whether inspired by his experience with ROSA or not, Ian loves robots.

CHOC Specialists Discover New Metabolic Condition

CHOC metabolic disorders division has discovered a previously unreported condition that could provide answers for parents of children experiencing unexplained liver failure.

Led by Dr. Jose Abdenur, the division’s medical director, the team has coined the genetic condition Mitochondrial Transcription Factor A (TFAM) deficiency and has published its findings this month in the journal Molecular Genetics and Metabolism.

Dr. Jose Abdenur
Dr. Jose Abdenur in the metabolics lab at CHOC.

The condition affects mitochondria, the energy-producing part of cells. If this transcription factor, a protein that binds to mitochondrial DNA, isn’t working, the body cannot maintain its mitochondrial DNA, which is essential to creating energy.

The infant patient described in the paper died from liver failure as a result from the mitochondrial DNA depletion. Subsequent testing concluded that her older brother also died previously from the same cause at 2 months of age.

Patient history

The 12-week-old patient presented at CHOC in 2015 after her newborn screening detected elevated levels of tyrosine, an abnormality that may indicate liver disease.

Blood tests revealed elevated liver enzymes, abnormal bilirubin levels and low blood sugar levels. She was soon diagnosed with cirrhosis.

CHOC worked with UCLA to perform whole exome sequencing of the patient. The laboratory found two mutations on TFAM, a gene that had never previously been associated with human disease. However, previous studies had shown that a mouse model with mutations in this gene developed lethal mitochondrial depletion.  This information was a clue to pursue research studies at CHOC’s laboratory in the patient’s fibroblasts for energy metabolism, which proved the pathogenicity of the mutation.

Additional molecular testing found the same homozygous variants in blood samples from the deceased sibling. While this genetic work was underway and about 10 days after the baby’s original admission to CHOC, the patient’s condition deteriorated further.

The team deemed the patient an unsuitable transplant candidate due to her condition being multisystemic. Because her liver had deteriorated so significantly and her muscles were also becoming affected, her family, in agreement with clinicians, opted not to pursue further heroic measures. They received palliative support care and the baby died at about 4 months old.

Future impact

Though this discovery will not bring back their children, the family is grateful to CHOC for providing answers and is hopeful that the discovery will lead to early diagnosis and treatment of this condition in other infants.

Dr. Abdenur expects the discovery and publication will lead liver centers to look at their samples for mitochondrial defects. CHOC’s team will also continue to work on the cells to potentially develop an experimental treatment in the future.

The full paper can be read in the journal Molecular Genetics and Metabolism.

CHOC-hosted Peds 2040 Conference Explores Future Pediatric Trends and Technological Advances

CHOC continues to lead the way in technology and artificial intelligence in the world of pediatric medicine, with the second annual “Pediatrics 2040: Trends and Innovations for the Next 25 Years.”  The conference was held in January at The Ritz-Carlton, Laguna Niguel, bringing together some of the brightest – and even youngest – minds in health care and technology from over 100 institutions worldwide, including Europe, Asia, Middle East and Africa.

Dr. Anthony Chang, Peds 2040 program chair and a keynote speaker, addresses the audience.
Dr. Anthony Chang, Peds 2040 program chair and a keynote speaker, addresses the audience.

Led by Dr. Anthony Chang, pediatric cardiologist and CHOC chief intelligence and innovation officer, the one-of-a-kind event explored emerging trends and future innovations with the objective to inspire and challenge attendees’ approach to care. Over 500 attendees   participated in presentations on genomic and precision medicine, regenerative medicine and 3D printing, pediatric nanomedicine, medical devices and connected health, robotics and robotic surgery, artificial intelligence and big data, and innovations in health care delivery.

Keynote speakers included Dr. Anthony Chang; Dr. Daniel Kraft, physician and scientist, Stanford Medical School; Dr. Wendy Sue Swanson, pediatrician and executive director digital health, Seattle Children’s Hospital; Dr. Patrick Soon-Shiong, scientist and chairman and chief executive officer, NantWorks; and  Dr. Peter Szolovits, professor of computer science and engineering, MIT.

Innovation Beach,” one of the highlights of this year’s conference,

Roger Holzberg, founder of My Bridge 4 Life and Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s, took third in the popular vote category of “Innovation Beach,” for the Infusionarium by Reimagine Well – an innovative video experience at CHOC Children’s Hospital offering a welcome distraction for young patients undergoing treatments that often last for hours.
Roger Holzberg, founder of My Bridge 4 Life and Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC, took third in the popular vote category of “Innovation Beach,” for the Infusionarium by Reimagine Well – an innovative video experience at CHOC Hospital offering a welcome distraction for young patients undergoing treatments that often last for hours.

gave startup companies an opportunity to present their innovative health care products, ideas or solutions to a panel of judges. Innovations ranged from a hand-operated device that allows a medical provider to rapidly deliver a large volume of fluid through traditional IV access, to a humanoid robot used to interact with kids and help with pain management.  The popular vote winner went to young innovators, Jake Haygood and Hampton Woods, high school freshmen from Georgia and members of international Children Advocacy Network (iCAN), for their RFID (radio frequency identification) wrist band, which can be read by hospital personnel and uploaded to a medical charting system.

First place went to Glooko, a Silicon Valley-based company that wowed the audience with their mobile, cloud-based system which helps diabetes patients and their care providers manage their diabetes more efficiently, while helping to improve outcomes and reduce costs.

Kambria Sheridan, mother of two, leads a discussion on parents’ and patients’ perspectives. Her youngest son was born with a hypoplastic right heart, a butterfly vertebrae in his neck, microtia of his right ear as well as an underdeveloped right arm.
Kambria Sheridan, mother of two, leads a discussion on parents’ and patients’ perspective. Her youngest son was born with a hypoplastic right heart, a butterfly vertebrae in his neck, microtia of his right ear as well as an underdeveloped right arm.

Karishma Muthu, a 14-year-old intern from the Sharon Disney Lund Medical Intelligence and Innovations Institute at CHOC (MI3), stunned everyone when she won the best abstract in the artificial intelligence category. Other MI3 interns also participated by presenting their ideas and helping during the event.

This year’s conference also included patients and families who shared their stories, or showcased their own ideas or innovations. Through the “Young Innovators Workshop,” kids were introduced to innovation and worked in teams to learn the steps needed to turn an idea into a prototype. For many attendees, this was one of the most amazing aspects of the conference, and it will be continued going forward.

 Learn more about Peds 2040. 

To participate in the next Peds 2040 conference, email Dr. Anthony Chang at achang@choc.org.

 

CHOC Appoints Chief Intelligence and Innovation Officer

Anthony Chang, MD, MBA, MPH, Chief Intelligence and Innovation Officer, Sharon Disney Lund Medical and Innovation Institute at CHOC
Anthony Chang, MD, MBA, MPH,
Chief Intelligence and Innovation Officer,
Sharon Disney Lund
Medical and Innovation Institute at CHOC

Dr. Anthony Chang, who helped establish the Sharon Disney Lund Medical and Innovation Institute at CHOC, has been appointed chief intelligence and innovation officer for the pediatric healthcare system.

Innovation has been a long-held organizational value at CHOC and now, with Dr. Chang’s leadership, vision and focus, along with the generous support of the Sharon Disney Lund Foundation, innovation will drive creative solutions that improve pediatric medicine in Orange County and abroad today and in the years ahead. We recently sat down with Dr. Chang to discuss the ways in which innovation is part of the hospital’s culture and to learn more about his vision for the future.

1) Innovation is becoming a trend at hospitals, such as Boston Children’s. What is CHOC doing different?

Innovation is simply solving problems with creativity and execution.

I do not feel that any children’s hospital should be competing with another in this culture of innovation, which promotes inter-institutional collaboration. What is truly inspiring is that we are already working very closely with a group of about 35 children’s hospitals in an innovation coalition (preliminarily called the international Society for Pediatric Innovation, or iSPI). This effort was a direct result of our Pediatrics2040: Trends and Innovations in the Next 25 Years meeting October 2013 here in Orange County.

2) What is CHOC doing to support a culture of innovation?

CHOC has embraced innovation in the past two years with the formation of the Medical Intelligence and Innovation Institute (MI3) with its monthly meetings and summer internship program. In addition, with the support for a chief intelligence and innovation officer, CHOC is investing in its future in both data analytics/ artificial intelligence as well as innovation in pediatric medicine. Throughout the next year or so, there will be group efforts to bring about a transformational change at CHOC to understand innovation and embed this in our institutional DNA.

3) What innovations are currently underway at CHOC to improve pediatric care?

We are very early in the process of innovation projects, but a few CHOC physicians and employees are being considered for MI3 innovation grants to provide time for creative solutions to problems. A few of the earliest innovations that are being explored at CHOC include: a new heart medication for babies; a new way to look at hospital patient data; a new way to predict heart failure in children with cancer who had chemotherapy; and a few devices in pediatric surgery. We are also organizing a quarterly CHOC Innovation Forum to engage all of our employees who like being creative!

4) What is your vision for the future?

I’d like to see an intellectual venue where all the pediatric stakeholders (doctors, nurses, allied professionals, parents, industry, etc) can come together to share and exchange innovations as well as growing iSPI, encouraging all the children’s hospitals to meet on a regular basis to discuss and practice pediatric innovation.

5) How can doctors and others interested in innovation outside of CHOC support this effort?

We welcome physicians and other pediatric stakeholders to support innovations in pediatric medicine by joining iSPI or attending our monthly MI3 meetings. Collaboration across multiple organizations and communities can lead to greater solutions to problems, positively impacting children here and across the globe.

Monthly MI3 Meetings

Meetings are held the third Monday of the month and feature updates on genomic medicine, regenerative medicine, nanotechnology, medical devices, artificial intelligence and robotics. For more information, contact Dr. Chang.