Fulfilling the mission and vision of The Children’s Hospital of Philadelphia Research Institute requires thoughtful and innovative leadership, with particular expertise in navigating the ever-changing waters of biomedical research.
The Research Institute’s leadership was bolstered in June 2014 as seasoned investigator Dennis Durbin, MD, MSCE, became the new director of the Institute’s Office of Clinical and Translational Research (OCTR). Before assuming his new role, he served as the co-scientific director of the Center for Injury Research Prevention.
The OCTR “assists clinical and translational investigators in identifying scientific opportunities and in forging productive collaborations” across both CHOP and the University of Pennsylvania. Dr. Durbin took over the office’s leadership reigns from Mary Leonard, MD, MSCE, who, after nearly a quarter-century at Children’s Hospital and the University of Pennsylvania, left CHOP to pursue other exciting research endeavors at Stanford University.
A professor of Pediatrics at CHOP and Penn, Dr. Durbin is a member of the Division of Emergency Medicine and an associate scholar at the Center for Clinical Epidemiology and Biostatistics. An internationally renowned leader in pediatric injury prevention research, Dr. Durbin has particularly focused on the prevention of motor vehicle occupant injuries to children and the prevention of teen driver crashes.
He served as the co-principal investigator of Partners for Child Passenger Safety, a partnership between CHOP and State Farm Insurance Companies that resulted in the world’s largest child-focused motor vehicle crash surveillance system.
Dr. Durbin has also served on various local and national committees including the Committee for Injury, Violence and Poison Prevention of the American Academy of Pediatrics.
More than 40 percent of children in the U.S. are exposed to some form of violence, which has become a public health epidemic with significant health and psychosocial consequences. Some of those possible consequences include poor physical, emotional, and developmental health; long-term physiologic and brain changes; school failure, drug abuse, and delinquency; and the possibility of more violence.
In an effort to reduce the severity and impact of violence and aggression on children and families not only in Philadelphia communities but also across the country, The Children’s Hospital of Philadelphia launched the Violence Prevention Initiative (VPI).
“As an institution that exists to promote the health and well-being of children and as the nation’s leading pediatric hospital, it is our responsibility to find ways to prevent this epidemic from spreading,” said Steven M. Altschuler, MD, the Hospital’s chief executive officer.
VPI is led by psychologist Stephen Leff, PhD, and emergency physician Joel Fein, MD, MPH, and includes a multidisciplinary team made up of some of the nation’s foremost experts in hospital-based violence intervention, evidence-based anti-bullying methods, and trauma-informed care. Through the strength of its longtime partnerships with community organizations, CHOP’s VPI builds on years of rigorous public health research to address and prevent ongoing concerns such as bullying in schools, intimate partner violence (IPV) in the home, and assaults in the community.
The VPI programs concentrate CHOP’s medical training, mental health programs, provider training, research expertise, and knowledge of public health policies to interrupt violence while ensuring that limited resources are spent efficiently with the greatest chance for impact. Interventions occur at locations that are relevant to CHOP patients — within schools, primary care, and hospital sites.
The majority of children reached by VPI may never be CHOP patients, but witness violence in their schools or communities. VPI works within schools to provide evidence-based, whole-school approaches to bullying prevention for children in third through eighth grade. These programs address the multiple forms that aggression and bullying can take, including physical, social (such as gossiping and threatening to withdraw friendships), and cyber-bullying. This training gives them tools to handle and avoid more dire forms of violence as they grow older.
In addition, IPV counselors support clinical staff in screening for and addressing IPV and teen dating violence in CHOP’s patient population. This is a partnership with Lutheran Settlement House, with the goal of minimizing the adverse effects of childhood IPV exposure. Healthcare provider training and parenting education is provided as well.
And children aged 8 through 18 years who arrive in CHOP’s Emergency Department with injuries from an assault receive long-term intensive support from a violence prevention counselor in the hospital and after discharge to reduce re-injury or retaliation and to promote physical and emotional healing.
“VPI programs reach beyond the hospital and doctors office into schools, homes, neighborhoods, and recreation centers by empowering and training kids and adults to interrupt the cycle of violence,” said Dr. Fein, who added that the initiative “aims to become a national model for hospital-led youth violence prevention.”
Now that electronic health records (EHRs) are more prevalent in clinical settings, doctors and other healthcare works increasingly use the technology during patient visits. EHRs are valuable not only for improving healthcare, but also for enhancing patient safety and confidentiality, coordinating care, and engaging patients and their families.
But the use of EHRs is not limited to healthcare workers who manage and coordinate patient care. More and more, families are being encouraged to spend some screen time on their own entering health-related preferences and goals. Providing information on these goals helps providers tailor treatments and respond to patients’ most pressing concerns.
The ability of patients to submit health information and actively participate in their healthcare is a main focus of Meaningful Use Stage 3 (MU3) criteria. The federal government allocated $27 billion to fund a staged program to boost the meaningful use of EHRs. A phased approach to participation helps eligible providers move from creating information in Stage 1, to exchanging health information in Stage 2, to focusing on improved outcomes in Stage 3.
Yet a knowledge gap remains on the best ways to accomplish MU3’s objectives, so the Agency for Healthcare Research and Quality funded 12 research projects to provide real-world evidence to inform MU3 policy development and implementation. Alexander G. Fiks, MD, MSCE, who co-directs the Pediatric Research Consortium (PeRC), leads one of those studies at Children’s Hospital that aims to help policymakers understand the feasibility of using patient portals linked to EHRs to foster patient engagement in pediatrics.
“Data is lacking on which Meaningful Use goals can be reasonably achieved in pediatric primary care settings,” Dr. Fiks said. “We are on track to potentially shape what the expectations should be about using patient portals and these types of tools to collect patient reported outcome data as Stage 3 is rolled out.”
The study will use the patient portal “MyAsthma,” which provides asthma education, collects patient-reported outcomes, evaluates medication use and side effects, and tracks parents’ preferences and goals. The portal transmits information entered by parents to the clinician’s office, which allows the medical team to address immediate problems and adjust treatment if needed.
Asthma is well-suited to the study of patient portals because it has a high prevalence, affecting more than 7 million children in the U.S., especially in socioeconomically disadvantaged communities. It requires symptoms to be tracked over time, and it poses a significant burden on patients’ and families’ quality of life. Patients with persistent asthma regularly use controller medications, so patient portals also may help in medication management for this population.
“On a monthly basis, families check in,” Dr. Fiks said, “so their healthcare isn’t just tied to office visits. There is ongoing monitoring of how kids with this condition are doing.”
A unique aspect of the study is its approach to primary care research across two networks. The American Academy of Pediatrics electronic subnetwork of Pediatric Research in Office Settings (ePROS) is collaborating with PeRC. This is enabling the researchers to evaluate two types of patient portals used across multiple EHR vendors in varied pediatric primary care settings with at least 20 percent Medicaid patients.
“Little is known about the effectiveness of meaningful use policy, and even less is known about how it applies to pediatrics,” Dr. Fiks said. “Most meaningful use research has primarily been structured within adult healthcare settings. Being able to inform how the process works within pediatric settings is important because the needs of children are different.”
Dr. Fiks anticipates a rapid turnaround time for study results. The majority of data from parent surveys were collected over the summer, followed by individual interviews of parents and practitioners to describe any factors that facilitated or posed barriers to patient portal adoption. He expects to identify strategies that will directly inform national healthcare priorities for MU3, which are scheduled to take effect in 2017.
CHOP’s Department of Biomedical and Health Informatics, Center for Pediatric Clinical Effectiveness, and PolicyLab also are contributing to the study, bringing together CHOP’s health service research, policy, and technological expertise.
A nationally esteemed Pediatric Advanced Care Team (PACT) at The Children’s Hospital of Philadelphia provides comprehensive pediatric palliative care services that can help to reduce a child’s pain, manage other distressing symptoms, and provide emotional support. Yet many families and caregivers elsewhere are not as familiar with palliative care’s benefits, and healthcare providers hesitate to recommend palliative care for their youngest patients.
The National Institute of Nursing Research (NINR) last year launched a national campaign, “Palliative Care: Conversations Matter,” to raise awareness of palliative care and increase its use within the pediatric population. Campaign materials include informational video vignettes and tear-off pads of patient education sheets that guide providers in how to engage in interactive palliative care discussions.
CHOP’s Chris Feudtner, MD, PhD, MPH, director of research for PACT, was involved in planning the NINR campaign and has had several research studies funded by NINR grants, including an ongoing two-year cohort study focusing on decision-making in advanced pediatric care.
“Palliative care is not exclusive to patients who are no longer seeking cure or no longer seeking life-prolonging therapy,” Dr. Feudtner said. “It can be in addition to those types of therapies. The campaign can help physicians provide a more clear explanation of what palliative care is and allay fears.”
An important part of implementing the campaign is having skilled staff as ambassadors at the bedside to collaborate with parents and incorporate their perspectives into the palliative care plan, Dr. Feudtner said. CHOP’s PACT, for example, helps families understand their children’s underlying disease process and prognosis, optimize symptom control, establish a comforting environment, and promote their highest quality of life.
A study Dr. Feudtner published in Pediatrics showed an explosion in the number of palliative care teams over the past 10 years in the U.S. Of 162 children’s hospitals that provided data for the study, 69 percent reported having a pediatric palliative care program.
“You need to have high quality palliative care teams in place in order to make a bad situation as good as possible,” Dr. Feudtner said.
Dr. Feudtner’s current research aims to improve understanding of how parents make extremely difficult medical decisions for children with life-threatening complex chronic conditions. The findings of his previous studies have emphasized the importance of psychology and the emotional realities involved in this daunting challenge.
“Our team and our experience at CHOP have helped us to heed the potential of what palliative care can do from many different angles,” Dr. Feudtner said. “And our research is taking us further. We have bedside learning from clinical practice intermixing with and informing health services and epidemiological research.”
Children’s Hospital investigators are taking on an increasing number of leadership positions while maintaining their vibrant programs at The Children’s Hospital of Philadelphia Research Institute, a testament to their influence and the impact of their endeavors.
One example is Nancy Kassam-Adams, PhD, who plans to reach out across the globe to advance trauma stress research and practice as she takes on the role of president of the International Society for Traumatic Stress Studies (ISTSS).
Traumatic stress occurs in significant numbers of children and parents after unintentional injuries like concussions, interpersonal violence, and other difficult medical events.
Founded 29 years ago, ISTSS is an international, interdisciplinary professional organization that includes researchers, psychiatrists, psychologists, social workers, nurses, and others with an interest in the study and treatment of traumatic stress. Dr. Kassam-Adams, associate director for behavioral research at CHOP’s Center for Injury Research and Prevention (CIRP), has been an ISTSS member for more than 20 years.
In her term as ISTSS president, Dr. Kassam-Adams is advancing the Society’s strategic goals by fostering mutual scientific exchange and engaging ISTSS’ broad international membership. ISTSS hosted a conference in Norway, and also appeared in Singapore, China, and Chile, among other places.
The Society’s Past President Karestan C. Koenen, PhD, described Dr. Kassam-Adams as having a “rare combination of passion, intelligence, and kindness. She will be successful because she will motivate ISTSS members through her passion to improve the lives of traumatized children, employ ISTSS resources intelligently, and listen to our members and make sure their views are represented.”
Dr. Koenen added that Dr. Kassam-Adams’ willingness to take risks will make the ISTSS a better organization. For example, she instituted a Spanish track at the ISTSS Annual Meeting in November that enabled the society to expand its reach to new attendees and allow greater interchange among researchers and clinicians in the U.S., Latin America, and Spain.
CHOP research over the past several decades has been at the forefront of understanding the impact of pediatric medical events (illness and injury) for children and their families through the lens of traumatic stress. Dr. Kassam-Adams has completed several large prospective studies of traumatic stress in children and youth in medical settings. With colleagues at CHOP, she developed innovative web-based tools for parents that promote secondary prevention of traumatic stress in ill or injured children.
“I see my involvement and leadership roles in ISTSS as mutually beneficial for ongoing CHOP research in this area, helping to tie us in with the larger field of traumatic stress and promoting mutual exchange of ideas with colleagues around the world who are doing very interesting work in related areas,” Dr. Kassam-Adams said.