Held May 18 from 1 to 3 p.m. PDT, the live interactive webinar will feature speakers from children’s hospitals and health systems throughout the country, including Dr. Anthony Chang, CHOC’s chief intelligence and innovation officer and medical director of MI3.
Here’s a list of speakers and their topics:
Srinivasan Suresh, MD, MBA, FAAP – VP, CIO, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA — Importance of Data for AI for COVID-19
Dawn Wolff – Chief Strategy Officer, Children’s Mercy Hospital, Kansas City, Mo. – Leveraging Innovation Assets in a Time of Crisis
Omkar Kulkarni, MPH – Chief Innovation Officer, Children’s Hospital Los Angeles – KidsX. Health – Accelerating Pediatric Digital Innovation through Collaboration
Leanne West – Principal Research Scientist, Georgia Tech Research Institute (GTRI), Children’s Healthcare of Atlanta Pediatric Technology Center, Atlanta, Georgia and President of ICAN, International Children’s Advisory Network – Offering the Pediatric Patient’s Perspective– Pediatric Patient Panel featuring ICAN Kids
Jennifer Olson – SVP, System Operations & Chief Strategy Officer, Children’s Minnesota, Minneapolis, MN – Innovation: A Strategic Recovery Element of Resuming the Business of Pediatric Healthcare
Sherry Farrugia – COO/CSO- Children’s Healthcare of Atlanta Pediatric Technology Center – Rapid Deployment of Innovation
Vasum Peiris, MD, MPH – Center for Devices and Radiological Health, Office of Strategic Partnerships and Technology Innovation, U.S. Food and Drug Administration
Kevin Maher, MD – Children’s Healthcare of Atlanta, Emory University – Connection between COVID-19 and Kawasaki disease.
“Pediatric Aspects of COVID-19” is co-hosted by International Society for Pediatric Innovation (iSPI) and Artificial Intelligence in Medicine.
pediatric healthcare might be an unlikely pairing – but a recent event combined
the two, drawing a range of multidisciplinary experts, including six CHOC
Children’s nurses, together to create disruptive solutions for pediatric and
physicians, engineers, data scientists, designers and entrepreneurs gathered at
the three-day “Hack-a-thon,” hosted by MIT Hacking Medicine and the Innovation Institute at the Innovation Center in Newport Beach, to develop tech
solutions and fast-track development of value-driven concepts.
The CHOC Nursing Research and Innovation Council helped to facilitate nurse involvement in this event, held Feb. 7 to 9. Six nurses actively participated on separate interdisciplinary teams: Donna Bigani, Erin Rentch, Pernilla Fridolfsson, Kylie Castro, Wanda Rodriguez and Jennifer Hayakawa.
The team led by
Kylie won second place and $750 for their innovation related to improving the
care of patients with autism spectrum disorder.
“The process was nerve-wracking and very tiring, but at the end of the weekend it was completely worth it and an amazing learning experience,” Kylie said. “It was so interesting stepping into another world, learning to speak another language – or what felt like another language – and being pushed outside my comfort zone.”
Several CHOC specialists as well as other staff also participated in the event.
Christine Schweer knew early on that her son, Colten, faced
some health complications.
Christine, a pediatric intensive care nurse living in the
Midwest with her husband, Todd, and then 3-year-old daughter, Chloe, recalls
feeling different during her pregnancy with Colten. Once Colten was born,
little things started popping up, she says.
Over the next few months, Colten developed several symptoms:
cold hands and feet, a sleepy demeanor, strange breathing and chronic, involuntary
eye movements – a condition called nystagmus.
At this point, Colten had already gone through several emergency department visits, including an admission to the hospital for respiratory syncytial virus (RSV) and eventually unexplained heart failure. But after genetic testing and screening for cystic fibrosis, cancer and blood clots all came back negative, Colten and his parents and doctors were left confused.
Searching for an answer
Colten was 6 months old when two new symptoms arose. An
occupational therapist thought Colten’s vision and hearing were waning, and an
ophthalmologist confirmed the therapist’s suspicion.
Then, around 9 months old, Colten’s weight mysteriously began
Meanwhile, the Schweers decided to relocate to California to
be near family. Christine, who now works in the PICU at CHOC Children’s at
Mission Hospital, transferred all of Colten’s records to CHOC. She began to
schedule visits to a team of CHOC providers, including pediatrician Dr. Lauren
Dwinell and pediatric cardiologist Dr. Anthony
Armed with her signature beach bag full of Colten’s records,
Christine continued the search for a diagnosis with Colten’s new care team, led
by Dr. Chang.
“We hit it off right away,” Christine says of Dr. Chang. “He
admired me for my dedication and advocacy for Colten, and I respected him for
his thoroughness, for trusting my parental instincts and for his commitment to
innovative treatment. We developed a good rapport and a lot of trust. He would
listen to me and recommend next steps for us both; then we would meet and
But the Schweers and Dr. Chang were still puzzled by
Colten’s symptoms, and Colten was now 2 years old.
“Nothing was adding up,” Christine says. Colten’s heart
function would worsen if off his medication, and his weight continued to climb.
“He was eating healthy and walking, swimming and exercising a lot, but his
weight was not budging.”
A few years passed while they continued to search for an answer.
An answer at last
Dr. Chang suggested they revisit genetic testing, despite
Colten having received genetic testing a few years prior.
“We trusted Dr. Chang’s instinct,” Christine says. “He
pointed out that tests can change even in a short time, and he wanted to be
sure we covered our bases.”
He sent them to Dr. Neda Zadeh,
a CHOC pediatric geneticist and Associate Director of the Molecular Diagnostic
A thorough walkthrough of Colten’s history and several
questions later, Dr. Zadeh had an idea. Recalling a case she encountered during
her fellowship at Stanford University, she brought up a rare condition called Alström
Syndrome and suggested they test for it.
While they waited, Christine got to work researching Alström Syndrome symptoms and immediately knew they had figured it out.
“Alström checked all the boxes: heart failure, flat and wide
feet, nystagmus, obesity and delayed developmental milestones – it completely
fit,” Christine says.
Six months later, a genetic sequencing test paid for by the foundation Alström Syndrome International confirmed what Christine and Dr. Zadeh suspected – Colten had Alström Syndrome. He was the 972nd person in the world to receive the rare diagnosis. By this point, he was 8 years old.
The Schweers were immediately welcomed into the Alström
family, Christine says. They got involved with the foundation that covered
Colten’s genetic testing, and families around the country and globe reached out
to them. Colten even met one of his current best friends, a boy with Alström
Despite the relief of a diagnosis after years of searching, Alström
came with some difficulties. The diagnosis meant that Colten’s vision was weak
and that his hearing would decline, too. The disease also affects his lungs,
kidneys, liver and weight.
“It of course felt horrible at first to me and my husband to
learn that Colten has a rare disease, but it was also a relief to know that we
had an answer now; there wouldn’t be so many surprises anymore,” Christine recalls.
The Schweers continued to work with Colten’s specialists, finally certain they knew the cause of his symptoms.
Collaboration is key
Christine reflects on the years of searching for answers and, despite the difficult moments, feels thankful for their collaborative care team at CHOC.
“If it weren’t for Dr. Chang suggesting more genetic
testing, if he hadn’t advised we see Dr. Zadeh and if it weren’t for the Alström
case Dr. Zadeh remembered from years before, we probably wouldn’t have figured
it out,” she says.
Christine thanks Dr. Chang for always keeping innovation in
“It would be easy to think inside the box and rely on past
test results,” Christine says, “but Dr. Chang always stayed up-to-date with
tests and looked at things creatively. It’s a multidisciplinary team approach
Most importantly, Christine admires the way Colten’s care
team relates with him.
“Doctors at CHOC are very personal with Colten,” she says.
“They get on his level and take time to get to know him and what he’s been up
to. Colten trusts them and wants to make them happy, so it’s always a positive
experience for him to see them.”
The approach has resulted in a fruitful partnership between Colten,
his parents and his providers.
“We’re all such a good team now. We feel confident we’re
doing everything we can possibly be doing for Colten.”
Learning about rare
disease at Peds2040
The experience getting Colten’s diagnosis sparked in
Christine a connection to the rare disease community. She heard about a rare
disease panel planned for the Pediatrics 2040
Conference, an annual conference on innovation in pediatrics spearheaded by
Dr. Chang, who had since been appointed CHOC’s Chief Innovation Officer and
head of CHOC’s Sharon
Disney Lund Medical Intelligence and Innovation Institute (MI3). Christine expressed
interest in attending right away, so MI3 sponsored her to attend. The
experience was invaluable.
“It was a great learning opportunity,” Christine says. “I
had lunch with a speaker whose son had a rare cancer, spoke with other families
and shared Colten’s story with providers, interns and residents.”
Thinking back to Colten’s journey to a diagnosis, Christine
felt grateful they had MI3 and Dr. Chang on their side. Peds2040 highlights the
importance of medical innovation to those with rare diseases.
One of the most memorable moments of the conference for Christine was Colten arriving toward the end of the day, when he was able to catch up with Dr. Chang.
Today, Colten is a loving, strong-willed, intelligent
13-year-old with a deep love of cars and an amazing memory. These days, he and
his family are grateful to be able to go several months between specialist
Even so, Christine notes, he faces some difficulties.
He is short for his age, so they’re seeing endocrinologist Dr. Himala Kashmiri to monitor his hormone levels. Additionally, like his vision, Colten’s hearing has waned and will continue to weaken during his teenage years. But, Christine reports, he has learned braille and thriving at it. And, because Alström can affect multiple organs, they continue to watch his heart, liver and kidney function with the help of medication and several specialists.
Colten continues to see Drs. Dwinell and Chang, along with nephrologist Dr. Shoba Narayan, pulmonologist Dr. Chana Chin, gastroenterologist Ellen Schoenfield, NP, registered dietitian Vanessa Chrisman, audiologist Dr. Kristi Panek and a pediatric ophthalmologist.
Nevertheless, the Schweers ensure Colten is empowered to do
what he wants.
“We’ve never held him back from doing something,” Christine
says. “If he wants to do something, we’re going to make it happen.”
Colten joined a Challenger baseball team for kids with
special needs, now one of his favorite activities.
And, despite vision loss, his love of cars is as strong as
“Before, he could instantly tell you what a car was when he
saw it” Christine says. “Now, he can identify them by sound.”
Some of Colten’s favorite memories so far include joining
his baseball team, going horseback riding and ziplining, and he has plenty more
“Despite his challenges, he’s very determined and has a
don’t-baby-me, I-can-do-this attitude that impresses me – and makes me a
nervous wreck,” Christine adds.
“When Colten was little, his doctors said he might not be able to talk. Now we joke that we have to beg him for five minutes of quiet. He doesn’t stop talking when he’s around his loved ones.”
Advice for other
Christine looks back at the difficult road to a diagnosis
and is now grateful for the community that Alström has brought her family.
“Let yourself grieve after a difficult diagnosis,” she says, “but also try to recognize you’re part of a new family. You’re not alone in this. Know that there are other parents out there who know what this feels like, so don’t try to take it on all by yourself. Despite how it can feel at first, every day is not going to be a bad day.”
Children’s nurse scientist will discuss the health system’s culture of
collaborative innovation this month at a prestigious Cleveland Clinic
conference, marking the first time outside organizations have been invited to
Hayakawa, DNP, CNS, CCRN, CNRN, will participate in a panel discussion titled
“Teamwork makes the dream work” at the seventh annual Nursing Innovation Summit on Oct. 23.
presentation, “Defending Childhood Through Collaborative Innovation,” Jennifer
will discuss the role of a nurse scientist; CHOC’s infrastructure to support
nurse innovation; and CHOC nurses’ collaboration with multidisciplinary teams while
in pursuit of innovation.
Multidisciplinary collaboration at
To illustrate the multidisciplinary collaboration at CHOC, Jennifer will also highlight a nurse-led innovation to study pediatric outcomes on a medical device that has been primarily used in adults. CHOC is among the first institutions worldwide to study the use of automated pupillometry in pediatrics. Pupillometers provide reliable and objective data to assist with early detection of subtle neurological changes.
pupillometry has been integrated into standard of care and clinical
decision-making in adult intensive care units across the nation,” Jennifer
says. “While there are multiple studies that validate the use of pupillary
metrics to improve clinical outcomes in adult populations, there are very few
published studies describing its use in children. Several children’s hospitals
are using it, but we’re the first to develop a robust database. Through that,
we’ve learned more about what works for our population and we have identified a
few challenges unique to pediatrics.”
The idea to begin collecting this data came from the pediatric intensive care unit nurses at CHOC – and has led to a valued partnership with the device manufacturer. Through that relationship, a CHOC multidisciplinary research team will soon begin evaluating the use of pupillary metrics in the assessment and management of concussion, Jennifer says.
help our industry partner to improve their product and will allow us to learn
more about application of this new technology in diverse clinical populations,”
she says. “We collaborated with the CHOC Research Institute and Innovation Lab to connect with lawyers to get advice about intellectual
property and data use agreement contracts. That’s the focus of the conference
and panel – working together to innovate healthcare – navigating all of those
panel, Jennifer will share the stage with a physician and a patent attorney,
and she’s thrilled for the opportunity.
collaboratively to innovate care is something I’m really passionate about,” she
The path to a research career
path toward becoming a nurse scientist at CHOC began about 18 years ago, when
she joined the organization as a unit secretary while in nursing school. Upon
graduation, Jennifer began work at the bedside in the pediatric intensive care
years, she transitioned to an educator role and later to a clinical nurse
specialist role. About two years ago, Jennifer
became CHOC’s nurse scientist.
thought I’d move away from the bedside,” she says. “But my career path and
professional growth has led to different opportunities.”
knew research was an important part of my role as a clinical nurse specialist,
but research always seemed daunting” she says. “Coming out of that program
changed my perspective and gave me the confidence to pursue my doctorate
Research isn’t done in a silo
In her role
today, Jennifer is charged with nurturing a culture of inquiry at CHOC.
Critical to that is building infrastructure, while also mentoring and guiding
nurses through the research process.
incorporates her experience as an intimated nascent researcher when working
today with nurses considering an investigation or embarking upon a new project.
“I tell them
they don’t have to do it alone,” she says. “Research and innovation isn’t done
in a silo; it’s done through a lot of multidisciplinary collaboration.”
As the role
nurses play in CHOC’s culture of inquiry continues to deepen, the results are
evident: In fiscal year 2019, CHOC nurses presented 31 posters and 24 podium presentations
at local and national conference and published five articles in peer-reviewed
“Research is integral to the care we provide at CHOC Children’s,” Jennifer says. “For families, it represents hope – hope for improved quality of life, hope for a cure, or hope to help other children and their families. It is an honor and a privilege to be a part of a team of talented people providing this innovative care.
Dr. William Feaster, CHOC Children’s chief health information officer, has been recognized nationally for his leadership in utilizing health information technology to increase positive outcomes for patients.
Already recognized as an international leader in population health technology and analytics, Dr. Feaster was one of five physicians to receive a Physician All-Star award from Cerner, a leading worldwide provider of health information technology solutions, services, devices and hardware, at its recent annual conference.
“This award further validates the important work underway at CHOC Children’s to use data to save children’s lives,” Dr. Feaster says. “Advancing technology will continue to dramatically enhance how we practice medicine, and I am proud to stand with CHOC on the forefront of a dramatic shift that will ultimately lead to more children having happier and healthier childhoods.”
As CHOC’s chief health information officer, Dr. Feaster leads the implementation and adoption of technologies that support clinical care and data analysis across the healthcare community. His work promotes the application of data science tools on healthcare data for predictive analytics, data mining, and related technologies to support new informatics initiatives.
Dr. Feaster’s work supports CHOC’s population health efforts; innovation and performance excellence initiatives; and clinical and translational research informatics.
At CHOC since 2012, Dr. Feaster has been involved in advancing information technology throughout nearly 40 years of clinical practice in pediatric critical care and anesthesia. He has held several medical administrative positions in hospitals, health systems and universities, and is board-certified in pediatrics, anesthesia and clinical informatics.
The annual Cerner Health Conference, held mid-October in Kansas City, Mo., drew nearly 14,000 healthcare industry leaders, practitioners and employees to discuss the latest innovations for health information technology.