ACCEL Video Series

Law, Technology, and End-of-life Planning

Advance directives (AD) were created as legal documents to help ensure that patients’ wishes are respected at the end of life. However, their actual impact on end-of-life care is less clear. Most people do not complete them, and they are often unavailable when needed. Recent technological innovations have sought to reinvent ADs. Tech start-ups offer tools to create and store digital ADs, and commercial electronic health record systems are expanding their functionality to store end-of-life wishes. I trace the history of ADs, discuss the limitations of the legal model, and describe current efforts to digitize end-of-life planning. I will focus in part on efforts at the University of Pennsylvania to develop an EHR-integrated online platform for documenting end-of-life plans.

Joshua Rolnick, MD, JD is a general internist and VA advanced fellow in the National Clinician Scholars Program at the University of Pennsylvania/Philadelphia VA Medical Center. Some of his recent work focuses on using technology to improve end-of-life planning. He was part of a team at the University of Pennsylvania that created oucarewishes.org, an EHR-integrated web platform. He completed a combined MD/JD between Stanford School of Medicine and Yale Law School, followed by residency in internal medicine at Stanford. He also practiced as a hospitalist at Santa Clara Valley Medical Center. 

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Complex Models to Understand Complex Health Behaviors

Most of the health conditions are directly or indirectly resulted from humans’ decisions. These decisions are affected by a wide range of personal and environmental factors. While understanding health decision-making processes can lead to significant breakthroughs in both treatment and prevention of different diseases, due to their complex nature, our knowledge about many of these processes is very limited. Computational and data-driven techniques are increasingly considered as powerful options to fuse various types of data (such as biological and behavioral data) to understand these complexities. In this talk, I will present several projects from the areas of smoking and obesity research in which I have used complex systems and AI methods to study health behaviors. Additionally, I will discuss some of our future research directions in the "healthy lAIfe" lab as part of the CIS Department and the recently launched Data Science Institute at the University of Delaware.

Dr. Rahmat Beheshti is an assistant professor in the Data Science Institute and also the Department of Computer & Information Sciences at the University of Delaware. He has a unique interdisciplinary background by finishing his postdoctoral training in Public Health and his Ph.D. and MSc in Computer Science. He has been working in the area of Health Data Analytics and Computational Epidemiology for the past eight years. Specifically, he has worked extensively on two major public health epidemics: smoking and obesity and has focused on very different aspects of these two, including the social, economic, environmental, and lately biological factors that affect these epidemics.  

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Racism, Adversity, and Child Health

Racial discrimination is a toxic psychosocial stressor that can affect individuals and communities of color.  This presentation will explore how common are perceptions of racism in minority children and explore the research on its effects on child health.  An overview of the development of the PRaCY—a psychometrically valid questionnaire to measure perceptions of racism in children will follow, followed by a model that describes how racism “gets under the skin” to contribute to poor health outcomes as well as racial and ethnic health disparities throughout the lifecourse. Finally, we’ll discuss the inclusion of racism into the expanded definition of “adverse childhood experiences” (ACEs).

Lee Pachter, DO is the Director of Community & Clinical Integration in the Department of Pediatrics at Nemours, and professor of pediatrics at the Sidney Kimmel Medical College at Thomas Jefferson University.  He conducts research in health disparities and the social determinants of health, and is the co-lead for community engagement & outreach for the Delaware-CTR ACCEL. Lee is also the director of the Population Health Policy program at the Jefferson College of Population Health, and the editor-in-chief of the Journal of Developmental & Behavioral Pediatrics

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Exploring the Human Pathome using Real-World Data

Pathome-wide association scans (PWAS) offer an alternative to the conventional one-disease-at-a-time paradigm. PWAS analysis displays negative, neutral, and positive associations across all diseases simultaneously without the filter of publication bias. Densely annotated displays allow for the visualization of large-scale associations, revealing how potential biomarkers are associated with disease clusters.  A practical example is presented using a massive insurance-claims database to explore how red-cell size variation is related to the presence, onset, and risk of diseases.

Joseph Yčas has a background in experimental biology and statistical interpretation, with over 25 years experience in the statistical analysis of agricultural research, drug discovery, industrial process control, and clinical trials. His interests include causal inference, graphical methods of analysis, and the application of industrial statistical methods to medical research. He holds degrees from Middlebury College, the University of Illinois, and Cornell University.

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Living laboratories: Building Clinical Programs with Impact

There is a steady flow of patients with special health care needs aging with their conditions. The demand to create appropriate clinical programs has grown accordingly. Dr. Wright would like to discuss a framework for clinical program development and evaluation, from a community based participatory research outset with implementation science tenets. As case study, she will use the Center for Special Health Care Needs’ newest programs: Cerebral Palsy and Sickle Cell.

Leading multi-disciplinary teams has been a highlight of Dr. Charmaine Wright’s career. A dual-trained internal medicine and pediatric primary care physician, she attended Harvard for college, medical school, and residency. Following residency, she completed a Robert Wood Johnson Clinical Fellowship at the University of Pennsylvania and joined faculty. As a med-peds primary care physician caring for complex patients, medical educator mentoring residents, and health services and clinical researcher dedicated to improving health disparities, she is passionate about implementing teams and programs that work for our most vulnerable patients. She has implemented RCT’s in community based settings and disseminated intervention programs for young adults who have been incarcerated and who have chronic disease. She works to bridge the gap between pediatric and adult care for patients with childhood-acquired medical conditions as the medical director of the Center for Special Health Care Needs.

 

 

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Health Care Utilization by Patients with Sickle Cell Disease in Delaware

This presentation discusses an evaluation of acute care utilization by patients with sickle cell disease in Delaware and population health based approaches for management.

Dr. Stephanie Howe Guarino is a Pediatric Hematology/Oncology Fellow at Nemours/AI DuPont Hospital for Children. She completed her Internal Medicine-Pediatrics residency at CCHS/Nemours and is currently pursuing a Master of Science in Health Policy at Jefferson College of Population Health. Her research interests include Adolescent/Young Adult Oncology as well as AYA Sickle Cell Disease and health policy strategies to address health care disparities.

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Behavioral Economic Insights into Physician Tobacco Treatment Decision Making

Physicians self-report high adherence rates for Ask and Advise behaviors of tobacco dependence treatment, but are much less likely to engage in “next steps” consistent with sophisticated management of chronic illness.  Important presuppositions regarding the potential “success” of tobacco-related patient interactions are likely limiting physician engagement by favoring the most secure visit outcome despite the limited potential for health gains.  Innovative approaches to counteracting the cognitive biases limiting estimations of success probabilities seem to effectively reverse this pattern and provide clues to improving the adoption of target clinical behaviors.  Given the enormous access the healthcare system has to dependent patients, re-thinking longstanding traditions may have a profound impact on the tobacco epidemic. 

Dr. Leone is an Associate Professor of Medicine at the University of Pennsylvania, and direct Penn’s Comprehensive Smoking Treatment Program.  He has been a PI, co-investigator and study physician on numerous studies of tobacco dependence treatment, with a focus on the social science of tobacco control and treatment decision-making.  He has been active in the publication of a number of treatment guidelines and policy position statements, and remains a strong advocate for adoption of novel, evidence-based approaches to increasing the effectiveness of provider-based care.

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Social Media-Based Parenting Intervention for Postpartum Depression

Maternal depression is common among women following childbirth. Depression adversely impacts a mother’s ability to parent. Current psychosocial and pharmacological therapy are effective at reducing depressive symptoms but may not improve parenting practices. In addition, few affected women successfully seek or engage in treatment. Social media and internet-based interventions hold promise for treating postpartum depression and resulting parenting dysfunction while addressing barriers to engagement in treatment. At the conclusion of this talk, participants will be able to

1)       Describe the prevalence of postpartum depression and its effects on parenting practices

2)       Explain the effectiveness of current treatments for postpartum depression and barriers to treatment participation

3)       Understand the potential role of social media and internet-based interventions

James Guevara, M.D., M.P.H., is a Professor of Pediatrics & Epidemiology at the Perelman School of Medicine at the University of Pennsylvania and an attending pediatrician at the Children’s Hospital of Philadelphia (CHOP).  He has research and clinical interests at the intersection of early childhood development, behavior, and health disparities. As a researcher, he has been the principal investigator on a number of federal research grants in the field of early childhood.

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Zeroing in on Ovarian Cancer

Nearly a quarter of a million new cases of ovarian cancer are diagnosed worldwide every year. Unfortunately, we still do not have an effective screening tool for early detection and current treatment options are not curative. As a result, the case-to-fatality ratio is 3-4 times higher than breast cancer and the five-year survival rates remain poor. However, new insights into the pathogenesis of ovarian cancer are having direct clinical impact on new and innovative prevention strategies and early detection approaches. In addition, new insights from genomic studies are opening up avenues for novel targeted approaches to attack unique vulnerabilities in this disease. This presentation will discuss the latest advances in ovarian cancer pathogenesis, genomics, and strategies to improve prevention, early detection, and treatment.

Dr. Drapkin is the Franklin Payne Associate Professor of Pathology in Obstetrics & Gynecology at Penn Medicine’s Abramson Cancer Center and Director of the Penn Ovarian Cancer Research Center. His research, teaching, and clinical activities focus on understanding the pathogenesis and genetic alterations involved in women's cancers, with the intent to translate these important biological principles into clinically useful diagnostic and therapeutic tools. Dr. Drapkin is an elected member of the prestigious American Society for Clinical Investigation and was recently awarded the Rosalind Franklin Award for Excellence in Ovarian Cancer Research from the Ovarian Cancer Research Fund Alliance. He serves on the editorial boards of Cancer Research, Clinical Cancer Research, and Gynecologic Oncology, and has authored over 140 peer-reviewed articles.

 

 

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Engaging Stakeholders in Research Using Online Crowdsourcing Methods

Online crowdsourcing is an innovative method to engage multiple stakeholder groups in research studies. Dr. Sood will present on the use of online crowdsourcing for her ACCEL Pilot Grant titled “Family psychosocial care model for congenital heart disease: A crowdsourced study.” She will discuss strengths and limitations of this methodology based on her experiences.

Dr. Sood is a pediatric psychologist at Nemours/A.I. duPont Hospital for Children and Assistant Professor of Pediatrics at Thomas Jefferson University. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and trains psychology residents and fellows in the specialty area of cardiac neurodevelopment. Dr. Sood’s research focuses on neurodevelopmental outcomes, developmental care and family psychosocial interventions for congenital heart disease. She is the principal investigator on an ACCEL Pilot Grant that has engaged stakeholders in the development of a family-based psychosocial care model for congenital heart disease using online crowdsourcing methods. Dr. Sood is also Co-Vice Chair of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), co-leads the Patient/Family Support learning lab within the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), and is on the editorial board for Clinical Practice in Pediatric Psychology.

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