Posts

Bear Institute PACK logo

Winners of the first annual Bear Institute PACK Event

Bear Institute PACK logo

On August 26, 2021, the Bear Institute, along with Children’s National Hospital and Cerner Corporation, hosted the first annual Bear Institute PACK (Pediatric Accelerator Challenge for Kids). Bear Institute PACK is a start-up competition aimed to address the gap in digital health innovation funding dedicated to children.

“Children are a unique population that requires different health solutions than those designed for adults, which address their unique needs,” says Dr. Lu de Souza, Vice President and Chief Medical Officer, Cerner Corporation. “With Bear Institute PACK, we hope to increase focus and delivery of digital health innovations for kids. Bear Institute PACK brings together the pediatric health care community, including pediatric health care providers and hospital administrators from across the country to identify top start-up digital applications that best serve children.”

This year’s start-up participants competed across four innovation tracks, including rare disease, telemedicine, remote patient monitoring and patient education. Student teams competed in a separate student track. Bear Institute PACK consists of three rounds of judging: an initial review of applications from the Bear Institute PACK team, judging from participating pediatric healthcare providers and administrators and review from an expert panel of judges during finalist start-ups’ live pitches.

The start-ups competed for a rich prize pool, including cash prizes totaling over $100,000, on-site pilots and software development support. Winners were selected in each of the event’s four innovation tracks, as well as an additional two student team winners. This year winners are:

  • In the rare disease track, first place winner, Bloom Standard, Inc., with its solution Automated Ultrasound Wrap that screen infants and children for serious lung and cardiac conditions, and second place winner, Mira Medical LLC, with its solution Bear Growth: A Three-Dimensional Pediatric Growth Modeling App.
  • In the telehealth track, Keriton, Inc., with its solution Keriton Kare, a healthcare SaaS platform built to improve outcomes for neonatal and pediatric patients.
  • In the remote patient monitoring track, Sonavi Labs, with its solution Feelix, a platform that features proprietary hardware embedded with clinically validated diagnostic software capable of detecting respiratory diseases.
  • In the patient education track, Smileyscope, with its comprehensive virtual reality (VR) platform to help support patients with procedural pain management, drug-free anxiety care, education, and guided relaxation.
  • Student team first place winner, CASP Technologies, with its solution Operation Serenity, which allows pediatric patients to prepare for and understand their simulated surgery to reduce anxiety and second place winner, Ankle Rehab, with its solution Foot Joystick for Children with Cerebral Palsy meant to improve mobility.

More information on this year’s winners can be found on the Bear Institute PACK website.

“This year’s Bear Institute PACK had a lot of start-ups and student team participants with very impressive innovation solutions for kids. Selecting a single winner in each innovation track was a tough decision, and it was encouraging to see all the work being done to bring these solutions to market,” says Matt MacVey, Vice President and Chief Information Officer, Children’s National Hospital. “Thank you to everyone who participated and helped make the inaugural Bear Institute PACK a success! We hope to make next year even bigger as we continue to strive to close the gap in funding for children’s digital health innovation.”

More information on next year’s event will be forthcoming on the Bear Institute PACK website.

Ugandan boy in hospital bed

Acute rheumatic fever often goes undiagnosed in sub-Saharan Africa

Ugandan boy in hospital bed

Despite low numbers of documented acute rheumatic fever cases in sub-Saharan Africa, the region continues to show some of the highest numbers of people with, and dying from, rheumatic heart disease, the serious heart damage caused by repeat instances of rheumatic fever.

Despite low numbers of documented acute rheumatic fever cases in sub-Saharan Africa, the region continues to show some of the highest numbers of people with, and dying from, rheumatic heart disease, the serious heart damage caused by repeat instances of rheumatic fever. A population-based study in the Lancet Global Health collected evidence of acute rheumatic fever in two areas of Uganda, providing the first quantifiable evidence in decades that the disease continues to take a deadly toll on the region’s people.

“These findings matter. Access to life-saving heart surgery is only available to a very small fraction of the hundreds of thousands of patients in Africa who have irreversible heart damage from rheumatic heart disease,” says Craig Sable, M.D., associate chief of Cardiology at Children’s National Hospital and one of the senior authors of the study. “It’s time to focus upstream on capturing these conditions sooner, even in low-resource settings, so we can implement life-sustaining and cost-saving preventive treatments that can prevent further heart damage.”

The authors, who hail from Uganda and several institutions around the United States, including Children’s National and Cincinnati Children’s Hospital Medical Center, note this is the first study to use an active case-finding strategy for diagnosing acute rheumatic fever. They also note that raising awareness in the community and among its healthcare workers while also finding new ways to overcome some of the diagnostic challenges in these low-resource settings greatly improved diagnosis and treatment of the condition.

The study also described clinical characteristics of children ages 5 to 14 presenting with both definitive and possible acute rheumatic fever, providing further clinical data points to help healthcare workers in these communities differentiate between this common infection and some of the other frequently diagnosed conditions in the region.

“With this study, we can now confidently dismiss the myth that acute rheumatic fever is rare in Africa,” the authors write. “It exists at elevated rates in low-resource settings such as Uganda, even though routine diagnosis remains uncommon. While these incidence data have likely underestimated the cases of acute rheumatic fever in two districts in Uganda, they show that opportunity exists to improve community sensitization and healthcare worker training to increase awareness of acute rheumatic fever. Ultimately this leads to diagnosing more children with the condition before they develop rheumatic heart disease, so that they can be offered secondary prophylaxis with penicillin.”

Children with suspected acute rheumatic fever participated in this population-based study. Data was collected over 12 months in Lira district (January 2018 to December 2018) and over nine months (June 2019 to February 2020) in Mbarara district.

Follow-up of children diagnosed in this study will provide more data on the outcomes of acute rheumatic fever, including a better understanding of the risk for a child to develop rheumatic heart disease.

This work was funded by the American Heart Association Children’s Strategically Focused Research Network Grant #17SFRN33670607 and by DEL‐15‐011 to THRiVE‐2 and General Electric.

Learn more about the challenges of rheumatic heart disease in sub-Saharan Africa and other developing parts of the world through the Rheumatic Heart Disease microdocumentary series:

PAS Logo

Children’s National participants share their expertise at PAS meeting

PAS Logo

The 2021 Pediatric Academic Societies (PAS) Virtual meeting hosted live-streamed events, on-demand sessions with live Q+A, a virtual exhibit hall, poster presentations and networking events that attracted pediatricians and healthcare providers worldwide. Among the physician-scientists, there were over 20 Children’s National Hospital-affiliated participants at this year’s meeting, adding to the conversation of pediatric research in specialty and sub-specialty areas.

Children’s National experts covered a range of topics, including heart disease, neurology, abnormal glycemia in newborns and antibiotic use in hospitalized children.

The “Neurological Implications of Abnormal Glycemia in Neonatal Encephalopathy and Prematurity” was a hot topic symposium presented by a panel of experts, including Sudeepta Basu, M.B.B.S., M.S., neonatologist at Children’s National.

The experts addressed the importance of recognizing early blood glucose disturbances in newborns with encephalopathy following birth asphyxia and its likely impact on brain injury and long-term outcomes. Although whole body cooling for newborns with encephalopathy after birth asphyxia is now standard of care in most advanced centers like Children’s National, many newborns still die or have neurological impairments. Dr. Basu emphasized on the need of continued advances in newer therapies and optimizing intensive care support for these vulnerable newborns immediately after birth. Dr. Basu’s presentation focused on the association of not only low blood glucose (hypoglycemia) but also high blood glucose (hyperglycemia) with abnormal motor, visual and intellectual outcomes in surviving newborns.

“Recognizing the problem is the first step for further advancement,” Dr. Basu said. “The scientific community needs to recognize the importance of early glucose status as an early marker for disease severity and risk of brain injury.” To sum up, Dr. Basu drew attention to recent newborn resuscitation guidelines from the International Liaison Committee on Resuscitation (ILCOR), which recommends close monitoring of blood glucose levels and optimizing supportive care to maintain it within normal range. Dedicated clinical trials are the need of the hour to guide what are “normal” glucose levels in newborns with encephalopathy and what treatment options are most beneficial.

Rana F. Hamdy, M.D., M.P.H., M.S.C.E., director of the Children’s National Antimicrobial Stewardship Program, delved into the increased number of children receiving care for acute conditions – like acute respiratory tract infections – from urgent care centers and direct-to-consumer (DTC) telemedicine companies during her session “Implementing Antibiotic Stewardship in Telemedicine and Urgent Care Settings.”

Telemedicine, in this case, refers to DTC telemedicine companies—not to be confused with the telemedicine established with primary care providers, like the services provided by Children’s National.

There has been little research focused on promoting good antibiotic stewardship in urgent care settings that tend to overprescribe antibiotics compared to a primary care setting. In addition to her work focusing on improving antimicrobial use within Children’s National, Dr. Hamdy has led collaborative quality improvement work nationally in both the pediatric urgent care and DTC telemedicine settings.

“What we’ve learned from our work with the DTC telemedicine setting is that leadership commitment coming from the company is a necessary core element,” Dr. Hamdy said. “There may be unique opportunities in the telemedicine setting to employ the home-grown computer systems for antimicrobial stewardship interventions, for example, incorporating clinical decision support or feedback reports into the electronic health record systems or displaying a commitment letter in the virtual waiting room.”

In the urgent care setting, Dr. Hamdy’s team recruited approximately 150 pediatric urgent care providers to participate in the national quality improvement initiative. Communication training modules for pediatric urgent care providers with scripted language for target infectious conditions — acute otitis media, pharyngitis and otitis media with effusion — were among the successful intervention approaches that led to improved appropriate antibiotic prescribing practices, according to her team’s findings.

“Understanding the prescribing practices in the urgent care setting is important to knowing where and how to focus on target conditions and to be able to support with education and resources,” Dr. Hamdy said. “And understanding the perceived barriers to judicious antibiotic prescribing can help to identify the highest yield interventions.”

This also reflects the approach taken by the outpatient antibiotic stewardship team at the Children’s National Goldberg Center, led by Ariella Slovin, M.D., primary care pediatrics provider at Children’s National Hospital. Dr. Slovin’s oral abstract entitled “Antibiotic Prescribing Via Telemedicine in the Time of COVID-19,” examined the effect that a shift to telemedicine due to the COVID-19 pandemic had on antibiotic use for acute respiratory tract infections. Overall, her team found a decrease in the proportion of acute respiratory tract infections prescribed antibiotics and concluded that the shift to telemedicine did not adversely affect judicious antibiotic prescribing for acute respiratory tract infections.

Other participants from Children’s National included: Taeun Chang, M.D.; Yuan-Chiao Lu, Ph.D.; Chidiogo Anyigbo, M.D., M.P.H.; Panagiotis Kratimenos, M.D.; Sudeepta Basu, M.B.B.S., M.S.; Ashraf Harahsheh, M.D., F.A.C.C., F.A.A.P.; Rana F. Hamdy, M.D., M.P.H., M.S.C.E.; John Idso, M.D.; Michael Shoykhet, M.D., Ph.D.; Monika Goyal, M.D.; Ioannis Koutroulis, M.D., Ph.D., M.B.A.; Josepheen De Asis-Cruz, M.D., Ph.D.; Asad Bandealy, M.D., M.P.H.; Priti Bhansali, M.D.; Sabah Iqbal, M.D.; Kavita Parikh, M.D.; Shilpa Patel, M.D.; Cara Lichtenstein, M.D.

To view the PAS phase I mini session list and the various areas of expertise at Children’s National, visit: https://innovationdistrict.childrensnational.org/childrens-national-hospital-at-the-2021-pediatric-academic-societies-meeting/

The PAS virtual conference phase II starts on Monday, May 10 and it goes through Friday, June 4. Those interested in attending may still register for phase II here: http://2021.pas-meeting.org/registration/

patient meets with ED robot

New robot helps care for kids in the emergency room at Children’s National Hospital

patient meets with ED robot

The robot, which is part of the FCC-funded COVID-19 Telehealth Program at Children’s National, is the latest innovation of the program that has rapidly evolved due to the ongoing pandemic.

Children and families who come into the emergency room at Children’s National Hospital may be surprised when their doctor comes in – in the form of a robot. Children’s National introduced a new robot to its Emergency Department (ED) for patients under evaluation for a COVID infection or being treated for other conditions. The robot, which is part of the FCC-funded COVID-19 Telehealth Program at Children’s National, is the latest innovation of the program that has rapidly evolved due to the ongoing pandemic.

“The robot can move in and out of spaces that otherwise we couldn’t get a significant number of providers in, especially with COVID-19 restrictions in place,” said  Shireen Atabaki, M.D., M.P.H., associate medical director of Telemedicine, emergency medicine physician and program director for the COVID-19 Telehealth Program at Children’s National. “This is a really exciting program and it implements innovation that we might not have been able to do without the insights we’ve gained from the pandemic.”

The robot is Wi-Fi-enabled and can be remotely controlled by the physician providing the teleconsultation to monitor patient vitals — such as heart rate, body temperature or respiration rate. This allows doctors to work virtually with their team while also having the flexibility to attend to patients faster.

“The pandemic has made us aware of the need to protect patients, families and staff from infectious diseases,” said  Alejandro Jose Lopez-Magallon, M.D., medical director of Telemedicine at Children’s National. The robot, he noted, spares clinicians from having to change their PPE, which saves time and gives them the ability to move on to the next patient while nurses and staff continue to provide bedside care.

“We have also seen that whenever a remote clinician is completely alone in the command center and can get on-screen without a mask, in a paradoxical way our patients may be more accepting of seeing a face on a screen that’s not covered with a mask and shield than a stranger using a mask in the same room,” Dr. Lopez-Magallon added.

Soon, the robot will also be used to coordinate subspecialty care — such as cardiac care — in the ED. This will provide more streamlined and expedited care for patients. Instead of leaving with a referral to set up a follow-up appointment with a specialist, patients would be able to receive the consult they need during the same appointment.

The robot is also presenting promising solutions for concerns around the number of restricted visitors. The team at Children’s National recently piloted using an iPad and other technology purchased with the FCC funds to remotely connect family members with patients.

“We downloaded the Zoom app to iPads in our ED to be able to coordinate calls between family members who can’t come in and see patients,” said Dr. Atabaki. “We are looking to implement this as a permanent solution keeping in mind how burdensome and emotionally stressful it has been for many not having the ability to be by the loved one’s side during such a challenging time.”

The FCC funds also covered the telehealth carts, tablets and other connected devices, the telehealth platform, telehealth equipment and innovative AI (augmented intelligence) to treat seriously ill COVID-19 pediatric patients.

The emergency department robot brings the robot-fleet at Children’s National up to three. The first robot was debuted in 2019 to serve children and families in the Cardiac Intensive Care Unit.

Natasha Shur

NORD names Natasha Shur, M.D., as hero of rare disease

Natasha Shur

Dr. Shur has a career working as a clinical geneticist for over a decade. She has been a part of the Children’s National community for more than two years. Dr. Shur as well serves as the lead for the Telemedicine Genetics Program under the Rare Disease Institute.

For her advancements in telemedicine genetics and rare diseases, Medical Geneticist Natasha Shur, M.D., received the 2021 Rare Impact Award from the National Organization for Rare Disorders (NORD). The recognition is the highest honor given to individuals that developed exceptional work benefiting the rare disease community.

“Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivation to keep moving forward,” said Peter L. Saltonstall, NORD president and CEO.

Given her involvement with several innovative projects at Children’s National Hospital, Dr. Shur built an active in-home telemedicine program where patients are being seen for first visits and follow-ups. Her work is helping families, including those with autistic children.

“Recently, in our division, we have been talking a lot about the concept of ‘failing forward.’ The idea is to try new approaches. These methods may not work, but the status quo does not always work either,” said Dr. Shur. “Since we have such a supportive and wonderful group, we can try new ways of working and new models of care.”

During the pandemic, the division led by Marshall Summar,.M.D., also created a telehealth first model of care and augmented educational apps and opportunities. The goal was to ensure that patients with rare disease would not lose access to care. The medical geneticists, genetic counselors, dieticians and administrative team met daily and cohesively to explore and improve new clinical approaches in order to put patients and families first.

Dr. Shur has a career working as a clinical geneticist for over a decade. She has been a part of the Children’s National community for more than two years. Dr. Shur as well serves as the lead for the Telemedicine Genetics Program under the Rare Disease Institute.

The Rare Disease Institute recently opened its new location on the Children’s National Research & Innovation Campus, a first-of-its-kind pediatric research and innovation hub located in Washington, D.C. The campus will provide a unique, state-of-the-art home for clinical genetic and specialty services.

boy checking his blood glucose

There’s still more to learn about COVID-19 and diabetes

boy checking his blood glucose

Researchers have learned a lot about COVID-19 over the past year and are continuing to learn and study more about this infection caused by the SARS-CoV-2 virus. There have been many questions about whether COVID-19 affects people with diabetes differently than those without and why this might occur.

Diabetes experts, like Brynn Marks, M.D., M.S.H.P.Ed., endocrinologist at Children’s National Hospital, have been studying the relationship between COVID-19 and diabetes, especially in the pediatric population. Dr. Marks tells us more about what we know so far and further research that needs to be done when it comes to COVID-19 and diabetes.

1.      What do we know about COVID-19 and its effect on people with known diabetes?

The Centers for Disease Control and Prevention (CDC) currently lists type 2 diabetes (T2D) as a high risk condition for severe illness related to COVID-19 infection, while stating that adults with type 1 diabetes (T1D) might be at increased risk. A recent study from Vanderbilt University found that people with T1D and T2D were at approximately equal risk for complications of COVID-19 infection. As compared to adults without diabetes, adults with T1D and T2D were 3-4 times more likely to be hospitalized and to have greater illness severity. Given these comparable risks, both the American Diabetes Association and the Juvenile Diabetes Research Foundation are lobbying for adults with T1D to be given the same level or priority for COVID-19 vaccines as adults with T2D.

However, as pediatricians, we all know to be wary of extrapolating adult data to pediatrics. Children are less likely to be infected with COVID-19 and if they are, the clinical course is typically mild. To date, there have not been any studies of the impact of COVID-19 on youth with known T2D. Our clinical experience at Children’s National Hospital and reports from international multicenter studies indicate that youth with T1D are not at increased risk for hospitalization from COVID-19 infection. However, paralleling ongoing disparities in T1D care, African Americans with known T1D and COVID-19 infection were more likely to be develop diabetic ketoacidosis (DKA) than their White counterparts.

With the increased use of diabetes technologies, including continuous glucose monitors, insulin pumps and automated insulin delivery systems, diabetes care lends itself well to telemedicine. Studies from Italy during the period of lockdown showed better glycemic control among youth with T1D. Further studies are needed to better understand the implications of telehealth on diabetes care, particularly among those in rural areas with limited access to care.

Brynn Marks

Diabetes experts, like Brynn Marks, M.D., M.S.H.P.Ed., endocrinologist at Children’s National Hospital, have been studying the relationship between COVID-19 and diabetes, especially in the pediatric population.

2.      What do we know about the impact of the COVID-19 pandemic on children with newly diagnosed diabetes?

Nationwide studies from Italy and Germany over the first few months of the pandemic found no increase in the incidence of pediatric T1D during the COVID-19 pandemic as compared to the year before; in fact, the Italian study found that fewer children were diagnosed with T1D during the pandemic. However, many centers are seeing higher rates of DKA and more severe DKA at diagnosis during the pandemic, possibly due to decreased primary care visits and/or fears of contracting COVID-19 while seeking care.

To date, no studies have been published exploring the incidence of T2D in youth. A group from Children’s National, including myself, Myrto Flokas, M.D., Abby Meyers, M.D., and Elizabeth Estrada, M.D., from the Division of Endocrinology and Randi Streisand, Ph.D., C.D.C.E.S. and Maureen Monaghan, Ph.D., C.D.C.E.S., from the Department of Psychology and Behavioral Health, are gathering data to compare the incidence of T1D and T2D during the pandemic as compared to the year before.

3.      Can COVID-19 cause diabetes to develop?

This has been area of great interest, but the jury is still out. The SARS-CoV-2 virus, which causes COVID-19 infection, binds the angiotensin-converting enzyme 2 (ACE2) receptor which is located in many tissues throughout the body, including the pancreas. SARS-CoV-2 has been shown to infect pancreatic tissue leading to impaired glucose stimulated insulin secretion. Although the SARS-CoV-2 virus could plausibly cause diabetes, assessment has been complicated by many confounders that could be contributing to hyperglycemia in addition to or rather than the virus itself. Stress-induced hyperglycemia from acute illness, the use of high dose steroids to treat COVID-19 infection, and the disproportionate rates of infection among those already at high risk for T2D, as well as weight gain due to changes in day-to-day life as a result of social distancing precautions are all likely contributing factors.

FCC Chairwoman Jessica Rosenworcel visited Children’s National Hospital

Acting FCC chairwoman Rosenworcel highlights telehealth for pediatrics

FCC Chairwoman Jessica Rosenworcel visited Children’s National Hospital

Acting FCC Chairwoman Jessica Rosenworcel visited Children’s National Hospital yesterday to highlight the importance of connectivity in healthcare and learn more about how the hospital is using telehealth to serve families during the pandemic. Children’s National Hospital in Washington, D.C., has provided pediatric care for 150 years and is among the nation’s top 10 children’s hospitals. Last year, Children’s National, an academic pediatric health system, saw more than 219,000 children from the capital region and from across the country and around the world.

“So much more can be done to connect children and their families — in both urban and rural parts of the country — to the care they need not only to survive, but to thrive,” said Rosenworcel. “Telehealth can help bridge that gap by bringing specialty care available only in hospital centers to smaller clinics and even the home where problems can be addressed quickly, before they prove life threatening. I was encouraged by the creative work that Children’s National Hospital is doing to address the unique health needs of children from all backgrounds especially during these challenging times.”

Acting Chairwoman Rosenworcel was joined by her colleague FCC Commissioner Nathan Simington for a tour of the hospital, where they met with Shireen Atabaki, M.D., M.P.H., associate medical director of Telehealth, Emergency Medicine physician and program director for the COVID-19 Telehealth Program at Children’s National Hospital. The visit also included a demo of a telehealth robot by Ricardo Munoz, M.D., Cardiac Critical Care Medicine chief, and Alejandro Jose Lopez-Magallon, M.D., medical director of Telemedicine, both at Children’s National.

“The pandemic catapulted telehealth as a tool for the future of health care delivery,” said Dr. Atabaki. “With the support of the FCC, Children’s National is excited to introduce a robot and other state-of-the-art digital health technology to support provider-to-patient pediatric care and expert consultations in our hospital’s emergency departments and across our region. These innovations in telemedicine will facilitate access to specialized expertise and care of COVID-19 patients.”

In May 2020, Children’s National Hospital was approved for funding as part of the FCC’s COVID-19 Telehealth Program and established a regional pediatric telehealth consortium. This will enable the hospital to expand its telehealth platform to support 15 health care sites in the region serving children and young adults, providing care to children with COVID-19, as well as those who are medically vulnerable.

Acting Chairwoman Rosenworcel is committed to closing the digital divide and sees access to telehealth care services — especially for underserved and marginalized communities — as a top priority. To learn more about telehealth efforts at the FCC, including the COVID-19 Telehealth Program and the Connected Care Pilot Program, visit: https://www.fcc.gov/connecting-americans-health-care.

a telehealth video visit with a patient family

Steady rates of patient satisfaction, reimbursement for cardiac telehealth during COVID-19

a telehealth video visit with a patient family

In the first two weeks of COVID-19’s major impact on the U.S., Children’s National Hospital moved most of its subspecialty in-person day-to-day clinics to virtual care. Children’s National Heart Institute was one of the first divisions to offer telehealth visits — in part because the team was an early adopter of telehealth in cardiology for both physician-to-physician consultations and direct-to-patient care, and stood poised to widely implement it.

A poster presentation at the American Heart Association Scientific Sessions 2020 quantified how the rapid transition to direct-to-consumer telehealth services impacted families with children who have congenital heart disease. The findings were presented by first author Kristine Mehrtens, M.S., B.S.N., R.N., C.P.N., clinical manager for the Heart Institute’s Ambulatory Services.

The team found that though in-person cardiology visits decreased during the COVID-19 pandemic, direct-to-patient telehealth visits were able to partially compensate for the sudden drop.

Additionally, payer reimbursement rates for these direct-to-consumer telehealth visits were similar to in-person clinic visits.

”This is exciting as prior to COVID-19  we have seen a lower reimbursement rates for these cardiology direct-to-consumer telehealth visits compared to in-person cardiology clinic visits,” said Ashraf S. Harahsheh, M.D., a pediatric cardiologist at Children’s National Hospital who has utilized direct-to-consumer telehealth visits since 2016 and is a senior author on the new study.

Patient satisfaction scores for care providers, including the likelihood of recommending a care provider from Children’s National Hospital, was the same for telehealth follow-up visits as it was for in-person clinic visits before the pandemic.

“As a multidisciplinary team, we agreed that diagnostic studies such as echocardiograms were important to include with follow-up visits,” says Mehrtens. “Together we developed a strategy to ensure we could meet the needs of the patients and also safely conduct in-person visits when necessary.”

Why is this important?

The pandemic and the resulting temporary halt to in-person, non-urgent/emergent visits earlier this year put the most vulnerable people with congenital heart disease at high risk for complications or worsening of their existing heart disease because they are unable to follow the recommended schedule for follow-ups.

The readiness of the Children’s Heart Institute team to quickly move to a telehealth platform successfully bridged the gap between in-person visits for some patients, allowing cardiology surveillance to continue safely.

“I am proud of our team of physicians and advanced care providers,” Harahsheh concludes. “We went from three providers (8%) pre-COVID 19 to 31 (79%) providers offering direct-to-consumer telehealth visits during the pandemic.”

What’s next?

Building on previous, smaller studies of telehealth before the pandemic began, the team will continue to conduct research to assess the safety and efficacy of these telehealth visits over time. The increase in patients who are continuing to see their providers for routine follow-ups via telehealth will allow a larger sample for effective study of this care model.

American Heart Association Scientific Sessions 2020
Impact of Telemedicine on Pediatric Cardiac Center’s Ambulatory Response to the 2019 Novel Coronavirus Disease (covid-19) Pandemic
P1692
9:00am – 10:00am
Fri, Nov 13  (CST)

Read additional news stories about cardiology telehealth:

COVID-19 triage tent outside the hospital Emergency Department

Telehealth team shares its pandemic response and discusses the future of telehealth

COVID-19 triage tent outside the hospital Emergency Department

The telehealth team at Children’s National Hospital is featured in DataBank IMX’s latest Tech Talk podcast. They discuss how the organization scaled up and managed the telehealth program through the early and mid phases of the COVID-19 pandemic, as well as the future of telehealth.

Featured in the discussion are clinical, operational and revenue cycle leaders from Children’s National:

  • Mary Daymont, M.S.N., R.N., CCM, Vice President, Revenue Cycle & Care Management
  • Clarence Williams, MHA, MBA, Director, Telehealth Program
  • Alejandro Lopez-Magallon, M.D., Medical Director, Telehealth Program, Cardiac Critical Care Specialist

tech talk

telemedicine control room

Telehealth and AI reduce cardiac arrest in the cardiac ICU

telemedicine control room

The telehealth command center located a few steps away from the cardiac ICU at Children’s National Hospital.

The cardiac critical care team at Children’s National Hospital has developed an innovative Tele-Cardiac Critical Care model aiming to keep constant watch over the most fragile children with critical heart disease in the cardiac ICU. The system combines traditional remote monitoring and video surveillance with an artificial intelligence algorithm trained to flag early warning signs that a critically ill infant may suffer a serious event like cardiac arrest while recovering from complex cardiac surgery. This second set of eyes helps bedside teams improve patient safety and quality of care.

These high risk post-operative patients are often neonates or small infants born with the most complex and critical congenital heart diseases that require surgery or interventional cardiac catheterization in their first days or weeks of life. At these early stages after crucial cardiac surgery, these patients can decompensate dangerously fast with few outward physical symptoms.

The AI algorithm (T3) monitors miniscule changes in oxygen delivery and identifies any mismatch with a child’s oxygen needs. It also tracks and displays small changes in vital sign trends that could lead to a serious complication. The cardiac ICU command center staff then analyzes additional patient data and alerts the bedside team whenever needed.

The Tele-Cardiac Critical Care program started two years ago. In that time, the program has contributed to a significant decrease in post-operative cardiac arrest for this patient population.

“It’s easy to see how a model  like this could be adapted to other critical care scenarios, including our other intensive care units and even to adult units,” says Ricardo Munoz, M.D., chief of Cardiac Critical Care and executive director of Telehealth. It allows the physicians and nurses to keep constant watch over these fragile patients without requiring a physician to monitor every heartbeat in person for every patient at every hour of the day to maintain optimal outcomes for all of them.”

Dr. Munoz and Alejandro Lopez-Magallon, M.D., medical director of Telehealth and cardiac critical care specialist, presented data from the pilot program at the American Telemedicine Association’s virtual Annual Meeting on June 26, 2020.

telemedicine control room

Telehealth connects pediatric heart experts about critical COVID-19 details

telemedicine control room

Telehealth is more than a doctor-to-patient tool during COVID-19. Experts in congenital heart disease meet weekly to share details about how it affects their vulnerable patients.

During the COVID-19 pandemic, telehealth has been crucial in allowing doctors to maintain safe contact with patients who require ongoing medical care without an office visit. Just as important is the role that telehealth is playing to connect care providers with each other to ensure that everyone around the world has the information they need to provide the best care possible for this swift-moving disease.

One good example of this specialist-to-specialist thought leadership connection is the ongoing weekly meeting hosted by the Children’s National Hospital cardiac critical care specialists. Since early in the spread of COVID-19, the Cardiac-ICU team, led by cardiovascular specialists including Ricardo Munoz, M.D., chief of cardiac critical care medicine and executive director of telehealth at Children’s National, have connected pediatric clinicians around the world to discuss how best to care for particularly vulnerable patients with pre-existing heart diseases, and to discuss breaking news in epidemiology of the disease and the effectiveness of various treatment approaches.

The video conference attracts hundreds of physicians and nurses who specialize in pediatric cardiac care from countries all over the world. In the last week of April, the meeting featured a late-breaking session to discuss new pediatric intensive care observations of inflammatory symptoms similar to Kawasaki disease, which were being detected in the United Kingdom, Paris and the United States. While more information is needed about this discovery, the ability of these experts to gather and compare disease phenotypes from country to country facilitates both the additional classification of pediatric-related symptoms and improves how all centers, no matter their location, can prepare to treat children who present locally with these symptoms.

In recent weeks, cardiac physicians and nurses from some of the world’s hardest hit regions, including Italy and Spain, have shared detailed information about their on-the-ground experiences to help colleagues in the U.S. and elsewhere better prepare for new developments.

“This new disease is a moving target, especially when it comes to understanding how it might impact children and adults with existing cardiac disease, particularly those with congenital heart disease,” says Dr. Munoz. “It is extremely important that we learn from each other, especially when we are able to connect with our colleagues in the epicenters of the most serious outbreaks of COVID-19. We are happy to host this important weekly meeting with the goal of helping every specialist keep as many patients with cardiac diseases as safe as possible throughout the global health emergency.”

If you would like to join these weekly telehealth meetings, please send your request to COVIDMultiCICUResponse@childrensnational.org.

Karin S. Walsh, Psy.D., and Gerard Gioia, Ph.D., in the Division of Neuropsychology pilot robotic telepresence technology to improve video visits.

Neuropsychology pilots robotic telepresence technology for telehealth

Karin S. Walsh, Psy.D., and Gerard Gioia, Ph.D., in the Division of Neuropsychology pilot robotic telepresence technology to improve video visits.

Karin S. Walsh, Psy.D., and Gerard Gioia, Ph.D., in the Division of Neuropsychology pilot robotic telepresence technology to improve video visits.

The telehealth program at Children’s National Hospital continues to expand access to remote specialty care for families, as well as increase consultation and liaison services to hospitals and clinicians who lack specialty care services on site. The Children’s National Division of Neuropsychology has been a leader in adopting multiple telehealth services including direct-to-consumer video visits, psychotherapy video visits, provider consultations and provider training and supervision.

Telehealth as a whole has been shown to increase access to care, with video visits in particular showing greater clinical and educational impact compared to telephone communications. Despite this, one key limitation has been the immobility of technology used to capture video visits.

To solve for immobility, Karin S. Walsh, Psy.D., is leading a pilot study testing the feasibility and acceptability of telepresence robotics in the division. Robot telepresence devices provide a unique approach to video visits, allowing for extended physical mobility and presence, while expanding interactions between providers and patients, supervisors and trainees and in educational interactions. Traditional video visits demonstrate good feasibility and acceptability by patients, families and staff. This new approach aims to increase the “presence” of the provider and further improve clinical impact, educational impact and patient satisfaction.

The division will initially incorporate two robots into clinical care beginning in May 2020.  The pilot study is expected to be carried out over the next 12-18 months, which is particularly timely given the COVID-19 pandemic. The robots, from Double Robotics, offer a high-tech, secure, integrated platform in a device that is user friendly and effective for moving freely through the clinical environment.

“With the addition of the telepresence robots, we anticipate an increase in the quality of care and access for patients and families to neuropsychological specialty care,” says Dr. Walsh. “In addition, given the geographic separation of the program – faculty and trainees are spread across six different locations – the versatile technology will increase the division’s ability to include clinicians with particular expertise into clinical sessions and consultations, as well as in training programs.”

After the pilot study, the team will assess the acceptability of robotic telepresence technology and the special qualities that this modality may offer to enhance quality of care within neuropsychology and within collaborating medical teams.

Laura Tosi

Technology bridges knowledge gaps in rare bone disease care

Laura Tosi

Dr. Tosi and colleagues presented on the NIH Rare Disease Day 2020 panel, Nontraditional Approaches to Improving Access for Rare Diseases.

As part of the global observance of Rare Disease Day in February, the NCATS and NIH Clinical Center hosted a special event to raise awareness about rare diseases, the people they affect and NIH research collaborations under way to address scientific challenges and advance new treatments.

This year, Children’s National Hospital orthopaedic surgeon Laura Tosi, M.D., took part in an afternoon panel, Nontraditional Approaches to Improving Access for Rare Diseases, where she outlined her work as the faculty chair of the Rare Bone Disease TeleECHO, a virtual meeting that allows care providers and experts to come together via the Zoom platform, discuss diagnosis of specific disorders and present cases for group input.

Dr. Tosi and the Rare Bone Disease Alliance have called Project ECHO Rare Bone Disease a game changer for care of these complex conditions. Rare bone disorders are only about 5% of all birth defects but include 461 skeletal disorders caused by 437 genes – making it difficult for any physician to see enough cases of any one disorder to correctly diagnose and treat it.

“Most doctors are like me, a pediatric orthopaedic surgeon. I need to know a lot of different rare diseases and it’s hard to keep everybody on the cutting edge,” Dr. Tosi says. “Even though we have found the genes for most of the disorders, the phenotypic overlaps, shortage of specialists and the multi-disciplinary needs of so many of the patients add to the challenges.”

So 7 months ago, Dr. Tosi joined together with colleagues at the Rare Bone Disease Alliance and the Osteogenesis Imperfecta Foundation to launch Project ECHO Rare Bone Disease. The now monthly telehealth meeting engages a distinguished faculty of experts from around the world and from across the spectrum of care for these rare bone disorders, including specialists in genetics, endocrinology, orthopaedics and others.

Project ECHO is a specific model for bridging distance and creating a network of professionals, with the goal of leveling the playing field for all by making vital information accessible to everyone, regardless of their location. In healthcare the model transcends traditional “telemedicine,” however. The program, launched from the University of New Mexico, self-describes itself as “telementoring, a guided practice where the participating clinician retains responsibility for the patient” but is able to discuss diagnosis and therapeutic recommendations with a set of esteemed faculty via a regular virtual meeting series.

In the case of the Rare Bone Disease TeleECHO, the ECHO’s faculty decided on two major foci for the curriculum. Half of the content is about how to make the right diagnosis and the other half shares the latest information about specific diseases. The sessions also offer free CME to attendees.

Dr. Tosi says that while finding cases to discuss can sometimes be challenging when it comes to rare bone diseases, she takes responsibility on herself to make sure the content is robust each month. So far the meetings have attracted between 40 and 90 participants per session – a great engagement rate for such a young teleECHO program.

“I believe ECHO advances knowledge of healthcare and democratizes it by offering universal accessibility across the globe,” Tosi notes.

The Rare Bone Disease Alliance, which consists of 12 organizations, experts and patient families working together, is now deciding what’s next for the Rare Bone Disease TeleECHO. They may develop disorder-specific ECHOs, are studying the frequency of the sessions and how best to improve participation for all sessions. The idea is to increase access to this expertise even further, as it could have critical impacts on patients worldwide living with these rare diseases.

In terms of key take-aways from the panel of experts at Rare Disease Day, the hope is that more disease groups might leverage this type of technology to connect people in nontraditional ways. Doing so has the potential to ensure that everyone with a rare disease receives the best support and care possible because their doctors have the knowledge they need when they need it.

Watch more sessions from the NIH’s Rare Disease Day 2020.

telemedicine

Children’s National partners with Sabará Hospital Infantil to provide pediatric telehealth services in Brazil

telemedicine

Through a new partnership with Sabará Hospital Infantil in São Paulo, Brazil, Children’s National Hospital will provide access to pediatric cardiac intensive care specialists and consultations via telehealth. This is the first international telehealth offering from Children’s National for pediatric cardiac critical care.

The partnership includes sharing care proposals, second opinion for complex cardiology cases, alignment with international benchmarks, adoption of diagnostic and therapeutic protocols, development of critical mass for continuous process improvement and continued training. Joint multidisciplinary visits will also be carried out to help Sabará validate and improve existing protocols and learn about innovations and service improvement opportunities.

Children’s National will also provide teleconference-based training for Sabará nursing staff and second opinions through medical teleconsultation with specialists in all areas of pediatric cardiology, based on each patient’s individual needs.

“It is an honor to partner with Sabará Hospital lnfantil,” says Ricardo Munoz, M.D., executive director of Telemedicine and chief of Cardiac Critical Care at Children’s National. “We look forward to working together toward our shared goal of providing the best health care possible for the children in Brazil.”

doctor's stethescope coming out of a computer

Virtual cardiology follow-ups may save families time and money

doctor's stethescope coming out of a computer

Virtual cardiology follow-ups via computer or smartphone are a feasible alternative to in-person patient follow-ups for some pediatric cardiac conditions.

A poster presentation at the AHA Scientific Sessions shows successful implementation of virtual care delivered directly to patients and families via technology.

Health provider follow-ups delivered via computer or smartphone is a feasible alternative to in-person patient follow-ups for some pediatric cardiac conditions, according to the findings of a pilot study presented at the AHA Scientific Sessions this week.

“We’ve used telemedicine in pediatric cardiology for physician-to-physician communications for years at Children’s National, thanks to cardiologists like Dr. Craig Sable,” says Ashraf Harahsheh, M.D., cardiologist at Children’s National Hospital and senior author of the study. “But this is the first time we’ve really had the appropriate technology to speak directly to patients and their families in their homes instead of requiring an in-person visit.”

“We developed it [telemedicine] into a primary every day component of reading echocardiograms around the region and the globe,” says Craig Sable, M.D., associate chief of cardiology at Children’s National. “Telemedicine has enabled doctors at Children’s National to extend our reach to improve the care of children and avoid unnecessary transport, family travel and lost time from work.”

Participants in the virtual visit pilot study were previously established patients with hyperlipidemia, hypercholesterolemia, syncope, or who needed to discuss cardiac testing results. The retrospective sample included 18 families who met the criteria and were open to the virtual visit/telehealth follow up option between 2016 and 2019. Six months after their virtual visit, none of the participants had presented urgently with a cardiology issue. While many (39%) had additional visits with cardiology scheduled as in person, none of those subsequent in-person visits were a result of a deficiency related to the virtual visit.

“There are many more questions to be answered about how best to appropriately use technology advances that allow us to see and hear our patients without requiring them to travel a great distance,” adds Dr. Harahsheh. “But my team and I were encouraged by the results of our small study, and by the anecdotal positive reviews from families who participated. We’re looking forward to determining how we can successfully and cost-effectively implement these approaches as additional options for our families to get the care they need.”

The project was supported by the Research, Education, Advocacy, and Child Health Care (REACH) program within the Children’s National Hospital Pediatric Residency Program.

###

Direct-to-Consumer Cardiology Telemedicine: A Single Large Academic Pediatric Center Experience
Aaron A. Phillips, M.D., Craig A. Sable, M.D., FAAP; Christina Waggaman, M.S.; and Ashraf S. Harahsheh, M.D., F.A.C.C., F.A.A.P.
Poster Presentation by first author Aaron Phillips, M.D., a third-year resident at Children’s National
CH.APS.12 – Man vs. Machine: Tech in Kids
AHA Scientific Sessions 2019
November 17, 2019
12:30 -1:00 p.m.

nurse checking boy's hearbeat

Children’s National launches telehealth collaboration with Whittle School & Studios

nurse checking boy's hearbeat

The School-Based Telehealth Program provides students quick access to medical care, rapid diagnosis of medical conditions, and better management of chronic conditions like asthma and diabetes, while minimizing time away from school for children – and from work for parents.

Children’s National Hospital and Whittle School & Studios announced a collaboration to provide students at the Whittle School’s D.C. campus with on-site video connectivity to health professionals at the hospital throughout the 2019-20 school year.

“We are thrilled to collaborate with Children’s National to offer our students world-class medical care from compassionate providers,” said Dennis Bisgaard, head of Whittle’s D.C. campus. “The health and safety of our students is our top priority, and this new collaboration ensures that they’ll be in excellent hands.”

A registered nurse from Children’s National will work on-site at Whittle’s D.C. campus to provide acute care, first aid, immunization record-keeping, medication management, EpiPen storage and training and more.

Children’s National’s School-Based Telehealth Program will also be available at the Whittle School. The on-site nurse will have the ability to use secure video-conferencing technology to connect students with board-certified physicians from Children’s National, if necessary.

The School-Based Telehealth Program provides students quick access to medical care, rapid diagnosis of medical conditions, and better management of chronic conditions like asthma and diabetes, while minimizing time away from school for children – and from work for parents. The program will complement existing care the student may already receive from their medical home or primary care provider.

“We are excited to collaborate with the Whittle School to design a program centered on our shared vision of helping children,” said Denice Cora-Bramble, M.D., executive vice president and chief medical officer, ambulatory and community health services at Children’s National. “Our goal is that this new collaboration will provide access to highly-specialized health care expertise to patients and families and our hope is that school-based nursing services, coupled with telehealth technology, will improve students’ health and education outcomes.”

Dr. Natasha Shur shares “Genetics and Telemedicine: Extending Our Reach” at the Future of Pediatrics CME

Virtual visits: A new house call for rare disease treatment

Dr. Natasha Shur shares “Genetics and Telemedicine: Extending Our Reach” at the Future of Pediatrics CME

Natasha Shur, M.D., an attending clinical geneticist at Children’s National Health System, shares “Genetics and Telemedicine: Extending Our Reach” at the Future of Pediatrics CME symposium in Bethesda, Maryland, on June 20.

“For the first time it wasn’t autism, autism, autism,” Shannon Chin says after learning the reason her newborn daughter, Sariyah, who turned 3 in August, couldn’t feed like normal infants was due to a tiny deletion of chromosome 22. This atypical deletion, a variation of a genetic condition known as 22q11.2 deletion syndrome, left Sariyah unable to suck and obtain nourishment as an infant. She was born premature and relied on assisted feeding tubes, inserted through her nose, to help her grow.

At 22-weeks-old, Sariyah received the diagnosis, which affects 1 in 4,000 children born each year. Sariyah’s genetic tests encouraged Chin to follow up with a nagging question: What if her two sons, Rueben and Caleb, both of whom were diagnosed with autism spectrum disorder (ASD), had something else?

Debra Regier, M.D., a medical geneticist at Children’s National Health System, encouraged Chin to follow up with a genetic test to answer these questions and to confirm 22q11.2 deletion syndrome symptoms she observed in Rueben.

A microarray analysis recently revealed Rueben, 17, has atypical  22q11.2 deletion syndrome. Caleb, 5, took the test and has developmental delay and ASD, which is more likely to occur in children with 22q11.2 deletion syndrome. He tested negative for the same deletion as his siblings. Additional tests are underway.

As Chin juggles complex care for her children, she realizes the partial deletion of chromosome 22 presents differently in every child. Sariyah and Rueben share short stature; they fit into tiny clothes. That’s where the phenotypical clues stop. They don’t have a cleft palate or dysmorphic facial features, distinctive of typical cases of 22q11.2 deletion syndrome. Sariyah has physical symptoms. Her intestines merged together, which gastrointestinal surgery fixed. Rueben experiences behavioral and neurological symptoms, including picky eating, aggression and uncontrolled body movements, which led the Chin family to Dr. Regier. Sariyah, Rueben and Caleb all have neurodevelopmental delays that impact their speech and development.

Coordinating multiple visits with geneticists, specialists, surgeons, genetic counselors and pediatricians, while navigating insurance, is a lot for any parent, but especially for those, like Chin, who have special considerations. Her children are non-verbal, so she pays close attention to their physical cues. Simplifying this process is one reason why Natasha Shur, M.D., a medical geneticist at Children’s National, introduced virtual visits to her patients, including Rueben, who had challenges with in-person visits. She thought: How can we make medical care easier for patients and families?

In January, Dr. Shur expanded virtual visits into a pilot program for 50 to 60 patients, including Sariyah and Caleb, with the support of a grant from the Health Resources and Services Administration (HRSA), the division of telemedicine at Children’s National and the Rare Disease Institute (RDI), the medical home to thousands of pediatric patients living with rare or genetic conditions. This program lets patients with concern for or already diagnosed genetic conditions in Maryland, the District of Columbia and Virginia, where Dr. Shur is licensed to practice medicine, test out virtual visits. Patients can download the HIPAA-compliant app or click through a secure link on a digital device to connect with Dr. Shur or a pediatric subspecialist.

Dr. Shur shares the preliminary findings of a new virtual visits pilot program,

Dr. Shur shares the preliminary findings of a virtual visits pilot program, which 50-60 local patients have tested in conjunction with in-person visits as a flexible way to manage medical care for genetic conditions.

On June 20, Dr. Shur shared a presentation about the program, “Genetics and Telemedicine: Extending Our Reach,” with pediatricians attending the Children’s National Future of Pediatrics continuing medical education (CME) symposium in Bethesda, Maryland.

Instead of a formal pilot program launch and end date with data, Dr. Shur mentions she conducts quality improvement assessments with each patient. She asks what they like about virtual visits. Do they feel comfortable with the software and technology? What types of visits do they prefer to do at home? What works best at the hospital? Do they want to keep using this program?

For Chin and most participants, the answer is yes. These families appreciate saving time, mileage, and being in close access to pediatric subspecialists from the comfort of home.

Parents can conference call from separate locations and share screens with the doctors, which works well if one parent is at work and another is at home – or if they live apart. Children can maintain their normal routine, such as finishing breakfast, homework, playing or staying in bed if they don’t feel well, though it is important to see the child in the virtual visit.

Families can obtain virtual assessments about urgent conditions without taking time off from work or school. Currently, only 10 to 30% of virtual visit patients with concerns about genetic conditions need an in-person, follow-up appointment. Fortunately, many conditions are less urgent than thought at the time of referral. Dr. Shur and specialists also benefit from observing children in their natural environment.

At the symposium, Dr. Shur translates this into clinical terms: reduced no-show visits, the ability to schedule shorter, more flexible visits, the ability to quickly and accurately diagnose conditions and provide care, and the ability to keep children with compromised immune function out of public areas, including waiting rooms. She discussed building rapport with patients, almost all of whom like these flexible care models.

“The idea is that we’re trying to understand what is best done using virtual technology and what is better for those in-person connections. More detailed physical exams take place in person. There are some cases where eye-to-eye contact and sitting in the exam room together is important,” says Dr. Shur. “Virtual visits should never replace in-person care. It’s just a forward way of thinking about: How do we use our time best?”

Case study 1: Saving families time and miles

Dr. Shur notes that for some patients, distance is a deciding factor for scheduling care. One mother’s five-hour round-trip commute to the children’s hospital, without traffic, is now five minutes. As an air-traffic controller, her schedule changes. She values the flexibility of the new program. To connect with Dr. Shur, she logs into the app on her computer or smart phone and brings her 2-year-old son into the video. He has cardiofaciocutaneous syndrome (CFC), a condition that affects 200 to 300 people in the world. As a result of a MAP2K1 gene variant, one of four genes – BRAF, MAP2K1, MAP2K2 and KRAS – associated with CFC, he experiences feeding problems, reflux, constipation and developmental delays.

By scheduling more frequent, but shorter check-ins, Dr. Shur assesses how he responds to treatment and makes recommendations to the mother in real time, such as trying prune juice for digestive health. They talk about rearranging feeding measurements and intervals, including his 2 a.m. dose of a peptide formula, which the mom blends at home to support her son’s growth. This modification equates to more sleep for everyone.

If follow-up tests, such as an X-ray or a blood test are needed, Dr. Shur coordinates these exams with the family at the hospital or at a nearby medical center. Depending on the condition, Dr. Shur may refer the family to an ophthalmologist, cardiologist, neurologist or learning and development specialist.

As a parent, Dr. Shur appreciates the direct approach virtual visits deliver.

“As a mom, if I’m taking my child to the doctor for two hours, I want to know why I’m there,” Dr. Shur says. “What are all the options?”

Case study 2: Observing children at home

Chin, who was also featured in Dr. Shur’s CME presentation, appreciates virtual visits for their convenience and efficiency, but her favorite feature is letting doctors observe her children at home.

“Children act differently outside the home,” says Chin.

For example, instead of describing Rueben’s rapid, rhythmic arm movements, a flinging of the arms, Chin showed neurologists at a scheduled virtual home visit. For Marc DiFazio, M.D., a pediatric neurologist, it was evident that Reuben had a movement disorder commonly seen in children with ASD, which is responsive to medication. In five minutes, her son had a diagnosis. The involuntarily movement wasn’t a behavioral issue, as previously thought, but a movement disorder.

“The regular in-person visit has a beautiful role and it’s very important, but virtual visits bring a different focus,” says Dr. Shur. “We get to see what the child’s life is like, what the home setting is like and what their schedule is like. How can we make their day-to-day life easier?”

Phenylketonuria (PKU), a rare condition that prevents the body from breaking down phenylalanine (Phe), an amino acid in protein, is another condition that pairs well with virtual visits. PKU affects 1 in 10,000 to 15,000 newborns in the U.S. People with PKU often require medication, food-based formulas and a protein-restricted diet to help their body process or regulate Phe.

If a patient with PKU connects through a virtual visit, they (or their parents) can open the refrigerator, talk about low-protein foods, discuss potential barriers to following a low-Phe diet, show the team new supplements or over-the-counter medications they are taking, discuss reactions to new therapies and, for adults, discuss an injectable drug recently approved by the FDA that has side effects but may ultimately allow them to follow a regular diet. These observations may not warrant a traditional trip to the doctor but are important for geneticists and patients to discuss. The goal of these visits is to identify and work around potential health barriers, while preventing adverse health outcomes.

To support this model, a 60-minute in-person visit scheduled every six months to a year can be broken into 15-minute video appointments at more frequent intervals. The result, based on the same amount of clinical time, is a targeted and detailed assessment to support personalized treatment and to help the patient adapt to a low-Phe meal plan.

During the video call, Dr. Shur and the team may prescribe a different medication, order a diagnostic procedure or schedule a follow-up appointment, if necessary. Depending on the situation, the patient will still likely come in for in-person annual visits.

Program assessment: Evaluating visits for each patient

Despite the popularity of virtual visits, Dr. Shur mentions this program isn’t a good fit for everyone – depending on a patient’s preferences. There are also limitations to consider. If a parent is hesitant to try this platform or if the comprehensive physical examination is the first key step, they should schedule in-person visits. The goal is to give parents who are requesting or curious about virtual visits a chance to try the platform. Having a secure area, preferably a private space at home, is important. A Wi-Fi connection and a digital device are required, which may create barriers for some patients.

However, Dr. Shur finds the program can alleviate hurdles – such as transportation challenges. One patient lives two hours away and couldn’t make it in for routine medical visits due to car problems. Now she makes every virtual appointment. For the first time in her life, she can manage medical care for herself and for her children.

Most insurance companies Dr. Shur works with cover virtual visits. The key is to have the virtual connection, or video, so Dr. Shur can still physically see the patient. Otherwise, the visit doesn’t count. A grant from CareFirst covers the costs of visits for patients who are using Medicaid or who don’t have medical insurance.

Parallel trends are happening across the country and for other conditions. Officials at the Federal Communications Commission (FCC) are reviewing a three-year pilot to expand the use of connected care services, like virtual visits, for low-income Americans living in rural areas. The Rural Health Care Program, funded by the FCC, supports hospitals that implement telehealth programs.

The American Academy of Pediatrics (AAP) released a statement in 2015 about telemedicine technologies, noting that if these technologies are applied in a synergistic model under one health care system or are guided by a family doctor, they can transform pediatric health care.

The key is to avoid a fragmented virtual health system.

The AAP applauds virtual connections that support collaborations among pediatric physicians, subspecialists and surgeons, reduce travel burdens for families, alleviate physician shortages, improve the efficiency of health care and enhance the quality of care and quality of life for children with special health care needs.

Planning for the future, investing in physician-patient partnerships

A poster at the Future of Pediatrics conference

The American Academy of Pediatrics supports telemedicine technologies that enhance the quality of care and the quality of life for children with special health care needs.

“The feedback has been phenomenal,” Dr. Shur says about the future of virtual visits for genetics. “Virtual visits will never replace in-person visits. They will be used in conjunction with in-person visits to maximize care.”

Dr. Regier and Jamie Frasier, M.D., Ph.D., medical geneticists at Children’s National, are introducing virtual visits to their patients, and many providers plan to do so as the program expands.

Sarah Viall, PPCNP, a nurse practitioner and newborn screening specialist, works with Dr. Shur and the geneticists during some visits to explain non-urgent newborn screening results to parents through virtual connections. Some parents find it’s easier to dial in during lunch or while they are together at home.

To improve education for patients and families, the education and technology committees at the RDI – led by geneticists and genetic counselors in partnership with the Clinical and Translational Science Institute at Children’s National – launched a new smartphone app called BearGenes. Families can watch 15 videos about genetics on the pin-protected app or view them online. The interactive guide serves as a gene glossary for terms patients may hear in a clinical setting. Topics range from genetics 101, describing how DNA is encrypted in the body through four letters – A, T, C and G – to different types of genetic tests, such as whole exome sequencing, to look for differences in the spelling of genes, which the genetic counselors explain are genetic mutations.

“As we unite patients with virtual health platforms and new forms of technology, we want to see what works and what doesn’t. We want their feedback,” Dr. Shur reemphasizes. “Virtual visits are a dynamic process. These visits only work through patient partnership and feedback.”

As Chin navigates atypical 22q11.2 deletion syndrome and ASD, she continues to appreciate the virtual waiting room and the ease of access virtual visits provides.

Sharing screens during virtual visits enables Chin to examine and better understand her children’s abdomen and kidney sonograms, cardiology reports and hearing exams. It forces everyone in the visit to focus on one topic or image at a time, strengthening the connection.

Chin still has questions about her children’s DNA, but she’s getting close to having more answers. She’s eager to see Caleb’s genetic test results and to work with Hillary Porter, M.S., CGC, the family’s genetic counselor, to interpret the data.

“We’re all learning together,” Dr. Shur says about the new pilot program, which applies to genomics at large.

As research about 22q11.2 deletion syndrome advances, geneticists, pediatric subspecialists and pediatricians are unifying efforts to work as one diagnostic and treatment team. Virtual visits enable faster consultations and can shorten diagnostic odysseys, some of which may take up to five years for children with rare disorders.

Attendees at the Future of Pediatrics conference

Nearly 400 pediatricians attend the Children’s National Future of Pediatrics CME symposium to learn about the future of pediatrics and about ways to work together as a diagnostic and treatment team.

For Chin, by better understanding how a tiny fragment of a missing chromosome may influence her children’s growth and development, she is already making long-term plans and coordinating multidisciplinary medical treatment for each child.

She hopes that by sharing her story and knowledge about 22q11.2 deletion syndrome, she can help other parents navigate similar situations. Heradvice to parents is to follow up on lingering questions by bringing them up with your medical team.

Chin is optimistic and happy she did. She’s grateful for the virtual visits program, which simplifies complex care for her family. And she’s still waiting, but she hopes to learn more about her middle child’s DNA, unraveling another medical mystery.

Read more about the virtual visits pilot program at Becker’s Hospital Review and listen to an interview with Dr. Shur and Shannon Chin on WTOP.

asthma inhailer

Picture imperfect: Eliminating asthma triggers through smartphones

asthma inhailer

Children’s National is among five awardees sharing $10 million in funding under Fannie Mae’s Sustainable Communities Innovation Challenge: Healthy Affordable Housing, a national competition to identify innovative ideas to help children and families enjoy safer homes. Fannie Mae made the funding announcement on May 21, 2019.

Children’s funding will underwrite a pilot program to use smartphones to enable virtual home visits, leveraging the skills of Children’s pediatric asthma specialists, health educators and community housing remediation specialists who will video conference with families in the home to identify potential housing asthma triggers.

According to the Centers for Disease Control and Prevention, 1 in 12 children and adolescents (6 million) have asthma, and one in six children with asthma visit the emergency department each year. In Washington, D.C., substandard housing can play an outsized role in triggering asthma exacerbations. Asthma-related hospital visits are 12 times higher in the city’s poorest neighborhoods, compared with affluent ZIP codes.

Working with community partners, Children’s faculty aim to eliminate asthma triggers right at the source, improving children’s well-being and creating healthier homes.

Right now during in-home visits, staff look for holes under kitchen sinks and gaps in the walls or flooring where pests and vermin might enter as well as leaks where mold and mildew can bloom. These systematic visits yield detailed notes to best direct resources to remediate those housing woes. The in-person visits however, are labor intensive and require delicate diplomacy to first open doors then to point out potential asthma triggers without coming off as judgmental.

“The beauty of our innovation is that residents can show us these same problematic locations using their smartphones, facilitating our efforts to target resources for that household. It’s a win for Children’s families because eliminating asthma triggers in the home means our kids will miss fewer school days, improving their lives and overall health,” says Ankoor Y. Shah, M.D., MBA, MPH, medical director for Children’s IMPACT DC Asthma Clinic.

Children’s collaborative project includes a number of partners, including:

Dr. Shah says the project will start in July 2019 with the pilot of virtual home visits starting in early 2020. This proof-of-concept model will hopefully be able to be replicated in other cities across the country.

Billie Lou Short and Kurt Newman at Research and Education Week

Research and Education Week honors innovative science

Billie Lou Short and Kurt Newman at Research and Education Week

Billie Lou Short, M.D., received the Ninth Annual Mentorship Award in Clinical Science.

People joke that Billie Lou Short, M.D., chief of Children’s Division of Neonatology, invented extracorporeal membrane oxygenation, known as ECMO for short. While Dr. Short did not invent ECMO, under her leadership Children’s National was the first pediatric hospital to use it. And over decades Children’s staff have perfected its use to save the lives of tiny, vulnerable newborns by temporarily taking over for their struggling hearts and lungs. For two consecutive years, Children’s neonatal intensive care unit has been named the nation’s No. 1 for newborns by U.S. News & World Report. “Despite all of these accomplishments, Dr. Short’s best legacy is what she has done as a mentor to countless trainees, nurses and faculty she’s touched during their careers. She touches every type of clinical staff member who has come through our neonatal intensive care unit,” says An Massaro, M.D., director of residency research.

For these achievements, Dr. Short received the Ninth Annual Mentorship Award in Clinical Science.

Anna Penn, M.D., Ph.D., has provided new insights into the central role that the placental hormone allopregnanolone plays in orderly fetal brain development, and her research team has created novel experimental models that mimic some of the brain injuries often seen in very preterm babies – an essential step that informs future neuroprotective strategies. Dr. Penn, a clinical neonatologist and developmental neuroscientist, “has been a primary adviser for 40 mentees throughout their careers and embodies Children’s core values of Compassion, Commitment and Connection,” says Claire-Marie Vacher, Ph.D.

For these achievements, Dr. Penn was selected to receive the Ninth Annual Mentorship Award in Basic and Translational Science.

The mentorship awards for Drs. Short and Penn were among dozens of honors given in conjunction with “Frontiers in Innovation,” the Ninth Annual Research and Education Week (REW) at Children’s National. In addition to seven keynote lectures, more than 350 posters were submitted from researchers – from high-school students to full-time faculty – about basic and translational science, clinical research, community-based research, education, training and quality improvement; five poster presenters were showcased via Facebook Live events hosted by Children’s Hospital Foundation.

Two faculty members won twice: Vicki Freedenberg, Ph.D., APRN, for research about mindfulness-based stress reduction and Adeline (Wei Li) Koay, MBBS, MSc, for research related to HIV. So many women at every stage of their research careers took to the stage to accept honors that Naomi L.C. Luban, M.D., Vice Chair of Academic Affairs, quipped that “this day is power to women.”

Here are the 2019 REW award winners:

2019 Elda Y. Arce Teaching Scholars Award
Barbara Jantausch, M.D.
Lowell Frank, M.D.

Suzanne Feetham, Ph.D., FAA, Nursing Research Support Award
Vicki Freedenberg, Ph.D., APRN, for “Psychosocial and biological effects of mindfulness-based stress reduction intervention in adolescents with CHD/CIEDs: a randomized control trial”
Renee’ Roberts Turner for “Peak and nadir experiences of mid-level nurse leaders”

2019-2020 Global Health Initiative Exploration in Global Health Awards
Nathalie Quion, M.D., for “Latino youth and families need assessment,” conducted in Washington
Sonia Voleti for “Handheld ultrasound machine task shifting,” conducted in Micronesia
Tania Ahluwalia, M.D., for “Simulation curriculum for emergency medicine,” conducted in India
Yvonne Yui for “Designated resuscitation teams in NICUs,” conducted in Ghana
Xiaoyan Song, Ph.D., MBBS, MSc, “Prevention of hospital-onset infections in PICUs,” conducted in China

Ninth Annual Research and Education Week Poster Session Awards

Basic and Translational Science
Faculty:
Adeline (Wei Li) Koay, MBBS, MSc, for “Differences in the gut microbiome of HIV-infected versus HIV-exposed, uninfected infants”
Faculty: Hayk Barseghyan, Ph.D., for “Composite de novo Armenian human genome assembly and haplotyping via optical mapping and ultra-long read sequencing”
Staff: Damon K. McCullough, BS, for “Brain slicer: 3D-printed tissue processing tool for pediatric neuroscience research”
Staff: Antonio R. Porras, Ph.D., for “Integrated deep-learning method for genetic syndrome screening using facial photographs”
Post docs/fellows/residents: Lung Lau, M.D., for “A novel, sprayable and bio-absorbable sealant for wound dressings”
Post docs/fellows/residents:
Kelsey F. Sugrue, Ph.D., for “HECTD1 is required for growth of the myocardium secondary to placental insufficiency”
Graduate students:
Erin R. Bonner, BA, for “Comprehensive mutation profiling of pediatric diffuse midline gliomas using liquid biopsy”
High school/undergraduate students: Ali Sarhan for “Parental somato-gonadal mosaic genetic variants are a source of recurrent risk for de novo disorders and parental health concerns: a systematic review of the literature and meta-analysis”

Clinical Research
Faculty:
Amy Hont, M.D., for “Ex vivo expanded multi-tumor antigen specific T-cells for the treatment of solid tumors”
Faculty: Lauren McLaughlin, M.D., for “EBV/LMP-specific T-cells maintain remissions of T- and B-cell EBV lymphomas after allogeneic bone marrow transplantation”

Staff: Iman A. Abdikarim, BA, for “Timing of allergenic food introduction among African American and Caucasian children with food allergy in the FORWARD study”
Staff: Gelina M. Sani, BS, for “Quantifying hematopoietic stem cells towards in utero gene therapy for treatment of sickle cell disease in fetal cord blood”
Post docs/fellows/residents: Amy H. Jones, M.D., for “To trach or not trach: exploration of parental conflict, regret and impacts on quality of life in tracheostomy decision-making”
Graduate students: Alyssa Dewyer, BS, for “Telemedicine support of cardiac care in Northern Uganda: leveraging hand-held echocardiography and task-shifting”
Graduate students: Natalie Pudalov, BA, “Cortical thickness asymmetries in MRI-abnormal pediatric epilepsy patients: a potential metric for surgery outcome”
High school/undergraduate students:
Kia Yoshinaga for “Time to rhythm detection during pediatric cardiac arrest in a pediatric emergency department”

Community-Based Research
Faculty:
Adeline (Wei Li) Koay, MBBS, MSc, for “Recent trends in the prevention of mother-to-child transmission (PMTCT) of HIV in the Washington, D.C., metropolitan area”
Staff: Gia M. Badolato, MPH, for “STI screening in an urban ED based on chief complaint”
Post docs/fellows/residents:
Christina P. Ho, M.D., for “Pediatric urinary tract infection resistance patterns in the Washington, D.C., metropolitan area”
Graduate students:
Noushine Sadeghi, BS, “Racial/ethnic disparities in receipt of sexual health services among adolescent females”

Education, Training and Program Development
Faculty:
Cara Lichtenstein, M.D., MPH, for “Using a community bus trip to increase knowledge of health disparities”
Staff:
Iana Y. Clarence, MPH, for “TEACHing residents to address child poverty: an innovative multimodal curriculum”
Post docs/fellows/residents:
Johanna Kaufman, M.D., for “Inpatient consultation in pediatrics: a learning tool to improve communication”
High school/undergraduate students:
Brett E. Pearson for “Analysis of unanticipated problems in CNMC human subjects research studies and implications for process improvement”

Quality and Performance Improvement
Faculty:
Vicki Freedenberg, Ph.D., APRN, for “Implementing a mindfulness-based stress reduction curriculum in a congenital heart disease program”
Staff:
Caleb Griffith, MPH, for “Assessing the sustainability of point-of-care HIV screening of adolescents in pediatric emergency departments”
Post docs/fellows/residents:
Rebecca S. Zee, M.D., Ph.D., for “Implementation of the Accelerated Care of Torsion (ACT) pathway: a quality improvement initiative for testicular torsion”
Graduate students:
Alysia Wiener, BS, for “Latency period in image-guided needle bone biopsy in children: a single center experience”

View images from the REW2019 award ceremony.

Dr. Bear Bot

Advances in telemedicine start with new cardiac critical care robot

Dr. Bear Bot

Dr. Bear Bot’s “robot-only” parking space in the Cardiac ICU. Alejandro Lopez-Magallon, M.D., is featured on the robot display screen, where he drives the robot from his location in the command center, in order to visit patient rooms and capture additional medical information and connect with patients, parents, and attending nurses and physicians.

The telemedicine robot at Children’s National arrived in late August 2018 and recently completed a 90-day test period in the tele-cardiac intensive care unit (cardiac ICU) at Children’s National. The bot travels between rooms as a virtual liaison connecting patients and attending nurses and physicians with Ricardo Munoz, M.D., executive director of the telemedicine program and the division chief of critical cardiac care, and Alejandro Lopez-Magallon, M.D., a cardiologist and medical director of the telemedicine program.

Drs. Munoz and Lopez-Magallon use a nine-screen virtual command center to remotely monitor patient vitals, especially for infants and children who are recovering from congenital heart surgery, flown in for an emergency diagnostic procedure, such as a catheterization, or who are in the process of receiving a heart or kidney transplant. Instead of traveling to individual rooms to check in on the status of one patient, the doctors can now monitor multiple patients simultaneously, enhancing their ability to diagnose, care for and intervene during critical events.

If Drs. Munoz or Lopez-Magallon need to take an X-ray or further examine a patient, they drive the robot from its ‘robot-only’ parking space adjacent to the nurse’s station, and connect with attending doctors and nurses in the teaming area. The onsite clinicians accompany one of the telemedicine doctors, both of whom remain in the command center but appear virtually on the robot’s display screen, to the patient’s room to capture additional medical information and to connect with patients and families.

Over time, the telemedicine team will measure models of efficiency in the tele-cardiac ICU, such as through-put, care coordination, and standards of safety, quality and care, measured by quality of life and short- and long-term patient health outcomes. This test run will serve as a model for future command centers offering remote critical care.

Ricardo Munoz and Alejandro Lopez-Magallon

(R) Ricardo Munoz, M.D., executive director of the telemedicine program and the division chief of critical cardiac care, and Alejandro Lopez-Magallon, M.D., a cardiologist and the associate medical director of the telemedicine program in the tele-cardiac ICU command center.

“As technology and medicine advance, so do our models of telemedicine, which we call virtual care,” says Shireen Atabaki, M.D., M.P.H., an emergency medicine physician at Children’s National, who manages an ambulatory virtual health program, which enables patients to use virtual health platforms to connect with doctors, but from the comfort of their home. “We find the patient-centered platforms and this new technology saves families’ time and we’re looking forward to studying internal models to see how this can help our doctors, enabling us to do even more.”

The ongoing virtual connection program that Dr. Atabaki references launched in spring 2016 and has enabled 900 children to connect to a doctor from a computer, tablet or smart phone, which has saved families 1,600 driving hours and more than 41,000 miles over a two-year period. Through this program, virtual care is provided to children in our region by 20 subspecialists, including cardiologists, dermatologists, neurologists, urgent care doctors, geneticists, gastroenterologists and endocrinologists.

To extend the benefits of virtual communication, while saving mileage and time, Dr. Atabaki and the telemedicine team at Children’s National will partner with K-12 school systems, local hospitals and health centers and global health systems.

The Children’s National robot was named Dr. Bear Bot after a 21-day voting period with patients and staff, beating 14 other child-selected names, including SMARTy (Special Medical Access to Remote Technology), Dr. Bot and Rosie. Dr. Bear Bot celebrated with an official reveal party on Valentine’s Day, which was streamed to over 220 patients through the hospital’s closed-circuit television and radio station.