Collectively serving CYSHCN from all 50 U.S. states, our 9 CYSHCNet Sites have deep frontline clinical care experiences with 300,000 active CYSHCN patients across the care continuum with over 1,500,000 outpatient; 225,000 emergency department visits; and 50,000 inpatient annual visits with strong diversity in types and numbers of chronic conditions, healthcare needs, functional status, age, race/ethnicity, income, and insurance. All sites offer a breadth of primary, specialty, and surgical care as well as therapy, social work, case management, patient and family education, family navigation, and other health services for CYSHCN. All sites have a medical home for CYSHCN with variation in size, setting, structure, personnel, care processes, and medical complexity of patients served. CYSHCN researchers across the 9 Sites are proficient in myriad designs including epidemiologic, interventional, cross-sectional, longitudinal, qualitative, quantitative, retrospective, and prospective. CYSHCN Site researchers are also experienced with case-control, time series, clinical trials (cluster, controlled, pragmatic, stepped-wedge etc.), difference-in-difference, focus group, interview, survey, systematic review, and other research methods.
The U.S. health system, historically, has not been well equipped to serve children and youth with special health care needs (CYSHCN). Fundamental gaps in health services leave many CYSHCN and families with unmet healthcare needs, unnecessary caregiving burdens, and suboptimal health, well-being, and quality of life. CYSHCN and their families deserve better.
Network research holds great promise for improving health systems for CYSHCN in a way that enables learning across multiple sites and systems, and creation and application of new knowledge that is nationally generalizable. In 2017, the , Health Resources and Services Administration entered into a Cooperative Agreement to establish a national Health Systems Research Network for CYSHCN to promote and conduct this research. On September 1, 2017, CYSHCNet began.
We are a network of committed researchers, families, clinicians, and administrative and policy partners who work together strategically to accelerate the generation and application of knowledge needed to best help CYSHCN and their families. We strive to not only conduct nationally-relevant health systems research, but also to increase research capacity by training emerging CYSHCN investigators.
Our structure includes a National Coordinating Center based at the University of Colorado School of Medicine (CUSOM), a Secondary Data Center based at Boston Children’s Hospital (BCH), three Collaborating Research Entities with particular strengths in health systems research for CYSHCN, and numerous other academic center partners. We are proud to have strong family partnerships in our work, with Family Voices as one collaborating research entity. Through the Cooperative Agreement structure, we partner closely with MCHB colleagues and staff to conduct and promote Network activities. As the network becomes better established, we plan to partner with additional interested individuals and groups to further build research capacity and ensure its relevance to practice, health policy, and financing.
- Integrate and align CYSHCN experts and families in a national research network: CYSHCNet is structured to integrate the views of researchers, care professionals, parents and families into a productive, national research network to develop, conduct and disseminate meaningful research to assess and improve health systems for CYSHCN.
- Advance knowledge of optimal health systems for CYSHCN: CYSHCNet undertakes concurrent multi-site and large-scale secondary data analysis studies aligned with our National Research Agenda in order to learn about and improve health care systems for CYSHCN.
- Train emerging CYSHCN investigators: CYSHCNet conducts educational programming, mentoring, and funding of pilot research projects for emerging CYSHCN investigators and established investigators who are new to the field of CYSHCN health systems research.
Dr. Stille is a general pediatrician with over 20 years of experience with CYSHCN. He practices primary care and outpatient complex care at Children’s Hospital Colorado. He has conducted primary care network research since 1999, with local networks as well as the national Pediatric Research in Office Settings (PROS) network. His major research interest is bringing researchers and practitioners together to improve systems of care for CYSHCN, and improving partnerships in the “medical neighborhood” between primary care practitioners, specialists and families. He is on several national working groups to improve care for patients and families, including at the American Academy of Pediatrics and the National Quality Forum.
As a general pediatrician and hospitalist, Dr. Berry’s 15 years of clinical, quality improvement initiatives, health services research, and policy work have focused on optimizing health outcomes and systems for children with medical complexity through proactive care planning, perioperative care coordination, integrated health information management, high quality discharge planning, and use of home and post-acute care services. His work has been published in JAMA, BMJ, and PLoS Medicine and has been awarded nationally by the Center for Integration of Medicine and Innovative Technology, the Agency for Healthcare Research and Quality, and Academy Health.
Network Director of Patient and Family Engagement, Family Voices
Ms. Wells is Executive Director of Family Voices’ (FV) National Office, an internationally renowned entity striving to achieve family-centered care for all CYSHCN. FV provides families with resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and be a trusted resource on health care. In her 26 years with FV, Ms. Wells has trained and offered technical assistance to family leaders and professionals throughout the country, testified in Congress, and collaborated on advocacy, clinical, policy, and research projects with numerous pediatric clinicians and federal and private agencies. Ms. Wells and Family Voices will ensure active partnership with families at all Network levels.
Executive Committee Member,
Research Coordinator at Family Voices
Ms. Hoover started advocating for patients, families, and quality healthcare shortly after her daughter’s diagnosis with cystic fibrosis in 2005. She served first as family faculty for residents and nursing students and later joined or co-founded three Advisory Councils supporting family-centered care at the University of New Mexico Hospital and Health Sciences Center. She received the Young Maternal-Child Health Professional Award from the Association of Maternal-Child Health Programs in 2015 and completed the Georgetown University Leadership Institute for Cultural Diversity and Linguistic Competence in 2015. Ms. Hoover has given presentations on patient and family perspectives at Association of Maternal-Child Health Programs conferences. Her professional interests center on patient and family roles in family-centered care and community based research, and on patient and family engagement and capacity building.
Professor of Pediatrics at Harvard Medical School, founder of Massachusetts General Hospital for Children (MGHfC) Center for Child and Adolescent Health Policy
Dr. Perrin is recent past President (2014) of the American Academy of Pediatrics and formerly led the Autism Intervention Research Network on Physical Health. His early work on childhood chronic conditions began with leadership of the Vanderbilt study of children with chronic conditions and their families. An elected member of the National Academy of Medicine, he has served on many NAM panels on children’s disability. Founding editor of the journal, Academic Pediatrics, he has over 200 peer reviewed publications on CYSHCN, including 4 randomized clinical trials on children (e.g., disease education and stress management for children with asthma; payment model on physician practice behavior; EHR-decision support for children with ADHD).
Professor of Pediatrics and Health Policy & Management at UCLA, Chief of General Pediatrics at UCLA Mattel Children’s Hospital
Dr. Chung is director of Health Services Research at the UCLA Children’s Discovery & Innovation Institute, Chair of the Pediatric Policy Council, and incoming President Elect of the Academic Pediatric Association. His research broadly addresses medically and/or socially vulnerable children and childhood determinants of adult health. Specific interests include primary care system redesign, children with medical complexity, early childhood development, educational environments, youth incarceration, childhood adversity and poverty, health behaviors, family leave, and child health policy. His work has been funded by NIH, CDC, HRSA, RWJF, and other public and private agencies.
Director Research Education Associate Professor of Pediatrics, MassGeneral Hospital for Children, Harvard Medical School
Dr. Kuhlthau is a nationally-recognized, health services researcher with a background in Sociology and Demography. Her 100 publications focus mostly on CYSHCN. She has strong quantitative and qualitative methodological skills, is senior faculty at the Harvard-wide Pediatric Health Services Fellowship, and received the Excellence in Mentoring Award from Harvard Medical School. She has been PI of the HRSA-funded Autism Intervention Research Network on Physical Health for the past two years. She has strong experience involving families in multi-site research studies.
Program Manager National Coordinating Center, University of Colorado Denver, Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS)
Dr. Shelton manages the National Coordinating Center’ administrative arm. She is a former critical care nurse with expertise in health literacy, social determinants of health, and underserved populations. She is a medical sociologist with a masters degree in policy and nonprofit management. In her spare time she teaches sociology at Metropolitan State University of Denver.
Rishi Agrawal, MD, MPH is an Associate Professor of Pediatrics at Northwestern University Feinberg School of Medicine and is a pediatric hospitalist at Lurie and La Rabida Children’s Hospital in Chicago. He is co-chair of the Academic Pediatric Association Complex Care Special Interest Group and has a research interest in Children with Medical Complexity.
Meg Comeau, MHA is a senior project director at the Center for Innovation in Social Work and Health at Boston University. She is a nationally recognized expert on the impact of Medicaid and federal health care reform on children with complex care needs. She brings more than 15 years of health care delivery and financing experience to her role as principal investigator for the Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity (CMC) and as co-principal investigator of the Catalyst Center, a project focused on insurance coverage for children and youth with special health care needs.Meg is a member of the Leadership Circle for the Institute for Professionalism and Ethical Practice (IPEP) at Boston Children’s Hospital and also serves as faculty for IPEP’s Program to Enhance Relational and Communication Skills.
Dr. Coller is Assistant Professor of Pediatrics, Chief of Hospital Medicine at the University of Wisconsin School of Medicine and Public Health, and an investigator at the University of Wisconsin Health Innovation Program. He is co-founder and co-director of the UW Pediatric Complex Care Program – a medical home for children with medical complexity. He completed medical school at Johns Hopkins University, residency and chief residency at Mattel Children’s Hospital UCLA , and fellowship through the Maternal and Child Health Bureau’s Child and Family Health Leadership Training Program at UCLA. Dr. Coller’s research focuses on eliminating hospitalizations for children with medical complexity. His research program’s long-term goal is to improve patient and family well-being by creating high-quality, safe, seamless experiences across the healthcare continuum. Dr. Coller is a member of the Editorial Board of Pediatrics, the National Quality Forum’s Patient Experience and Function standing committee, and co-author of Child Health: a Population Perspective.
Dr. Hall is Professor of Clinical Pediatrics at Vanderbilt University School of Medicine and the Section Head and founder of the Program for Children with Medically Complex Needs at Monroe Carell, Jr. Children’s Hospital. Prior to coming to Vanderbilt, he directed the Complex Care Center at Cincinnati Children’s Hospital Medical Center. Dr. Hall is a general pediatrician and former children’s hospital medical director who saw first-hand the need for improvement in the care of children with medical complexity. He became an early advocate for this population and has been involved in health services research, studying their impact on health care utilization, readmissions, and children’s hospitals. In addition, he is a clinician and educator who provides direct care to children with medically complex illness on a daily basis.
Dr. Dennis Kuo is a primary care pediatrician with a special interest in children with disabilities and medical complexity. He is Associate Professor of Pediatrics at the University at Buffalo, Division Chief of General Pediatrics at UBMD Pediatrics and an attending physician at Oishei Children’s Hospital in Buffalo, NY. His academic work has focused on family-centered care and family-identified health care needs of children with medical complexity, and more recently has evolved to care coordination design and health care system reform. Dr. Kuo’s prior work funded by Health Services and Resources Administration includes the Arkansas System of Care State Implementation Grant for Children with Special Health Care Needs, the Maternal and Child Health Research grant, and the Early Childhood Comprehensive Systems project. He is the current Chair of the American Academy of Pediatrics Council on Children With Disabilities (COCWD), following six years of serving on the Executive Committee of the COCWD, and he is a member of the Board of Directors of Family Voices.
Dr. Ricardo A. Mosquera is an Associate Professor of Pediatrics and Pulmonary attending at Children’s Memorial Hermann Hospital and serves as medical director of the High Risk Children’s program (complex care program) at McGovern Medical School at UTHealth. Dr. Mosquera’s interest is to develop, assess, refine, and promote advances in care for children with medical complexity (CMC). He conducted the first randomized clinical trial of an enhanced medical home for children with medical complexity. Published in JAMA, the trial demonstrated that comprehensive care delivered by the same complex care team who follow the patients in all settings, achieved the triple aim of improved healthcare outcomes (hospital utilization was reduced 47-69%), cost effectiveness (total clinic and hospital costs were reduced by $10 258 per child-year) and, improved patient experience of care (increased patient satisfaction). Dr. Mosquera and his team are developing a complex care fellowship program and have several ongoing clinical trials of health service interventions for CMC. Dr. Mosquera’s work is positioned to be rigorously tested and disseminated to multiple network sites.
Kate Taft, MPH, is the associate director for child and adolescent health at AMCHP, where she leads and supports the development, implementation, and evaluation of program activities related to child and adolescent health, including children and youth with special health care needs. Prior to this role, she led AMCHP’s work related to autism spectrum disorders and other developmental disabilities, including the State Public Health Autism Resource Center. Ms. Taft has over a decade of experience working on issues that affect children’s health, such as early childhood development, mental health, and injury prevention at the public health and individual levels. She also has coordinated the child fatality review team in Suffolk County, Ma. She received her MPH with a concentration in maternal and child health from the George Washington University and a BA in psychology from the College of William and Mary.
Debra Waldron, MD, MPH, FAAP, is the Senior Vice President of Child Health and Wellness at the American Academy of Pediatrics, where she over sees the Divisions of Developmental Pediatrics and Preventive Services, Children with Special Needs, and Safety and Health Promotion. Previously, Dr Waldron served as the Director of the Division of Services for Children with Special Health Needs at the Maternal Child Health Bureau in the US Department of Health and Human Services, Health Resources and Services Administration. She also worked for the University of Iowa as Vice Chair of Child Health Policy and Professor of Pediatrics. In that role, she oversaw the statewide system of services for children with special health care needs. Her areas of expertise are integrated health systems, population health, and family engagement.
Carolyn Allshouse is Executive Director of Family Voices of Minnesota and member of the Parent-to-Parent USA alliance. She has worked on projects to improve care for CYSHCN at the CARE Award with the Children’s Hospital Association, the Center of Excellence on Quality of Care Measures for Children with Complex Needs at Seattle Children’s Research Institute and Achieving a Shared Plan of Care for CYSHCN, funded by the Lucile Packard Foundation.
Debbie I. Chang, M.P.H, is Senior Vice President of Policy and for Nemours Children’s Health System. Ms. Chang was the founding Executive Director of Nemours Health & Prevention Services, an operating division devoted to using a comprehensive multi-sector, place-based model to improve children’s health and well-being in Delaware. She serves on the National Academy of Sciences (NAS) Board on Children, Youth and Families and NAS Roundtables on Population Health and Improvement and Obesity Solutions, the National Center for Children in Poverty, Winter Park Health Foundation Board, Asian Pacific Islander Health Forum and the University of Michigan Griffith Leadership Center Board. Ms. Chang has held key government positions including Deputy Secretary of Health Care Financing at the Maryland Department of Health and Mental Hygiene, with oversight for Maryland’s Medicaid program and National Director of State Children’s Health Insurance Program (SCHIP). Ms. Chang holds a master’s degree in Public Health Policy and Administration from the University of Michigan and a bachelor’s degree in Chemical Engineering from the Massachusetts Institute of Technology.
Mallory holds a Bachelor of Fine Arts in Creative Writing. She has worked , the federally funded National Center on Health Care Transition, and as the Youth Coordinator for the State of Maine’s Children with Special Health Needs Program. Mallory serves on Got Transition‘s Cabinet Executive Team. She has also served on advisories for Youth Move National, the Catalyst Center, and the National Genetics Alliance. Mallory has provided keynote presentations and technical assistance in many states, on the topics of transition to adulthood, youth engagement and self-determination for young people with special health needs and disabilities. In 2015, Mallory graduated with her Master’s in Public Heath from Boston University School of Public Health, and currently works in state policy in Denver, Colorado.
Dr. Forrest is Professor of Pediatrics at the Children’s Hospital of Philadelphia (CHOP) and the University of Pennsylvania. He is the Director of the CHOP Applied Clinical Research Center, which is devoted to advancing multi-institutional clinical and health services research in routine pediatric healthcare settings. Dr. Forrest serves as the Principal Investigator of the PEDSnet (pedsnet.org), a national consortium of children’s hospitals (>6 million children) that conducts patient-centered outcomes research among children and youth.
Dr. Houtrow is a pediatric rehabilitation medicine physician and health services researcher. She is an Associate Professor and Vice Chair in the Department of Physical Medicine and Rehabilitation for Pediatric Rehabilitation Medicine at the University of Pittsburgh School of Medicine. She directs the Pediatric Rehabilitation Medicine Fellowship and is the Chief of Pediatric Rehabilitation Medicine Services and the Medical Director of the Rehabilitation Institute at the Children’s Hospital of Pittsburgh. Dr. Houtrow’s main clinical focus is caring for children with disabling conditions to help to improve functioning and quality of life to the greatest degree possible. Her research focuses on improving how children with disabilities and their families access health care to optimize health care delivery.
Siem Ia is a Pediatric Nurse Practitioner for the Pediatric Medical Home Program at UCLA. The program provides primary care services and care coordination for children, adolescent, and young adults with medical complexity. Siem has participated in research and quality improvement projects that aim to improve health outcomes for children with medical complexity and enhance family partnerships to support the health of the child and promote family well-being. She has served as a Practice Transformation Facilitator for the UCLA complex care clinic and a local partnering community primary care clinic in a national collaborative. She is a trained Care Transitions Intervention Coach. Siem is the co-chair for the National Association of Pediatric Nurse Practitioner Pediatric (NAPNAP) Children and Youth With Special Health Care Needs Special Interest Group and as co-president for the NAPNAP Los Angeles Chapter. Siem received her Masters of Science in Nursing and PNP from Columbia University School of Nursing.
Jennifer Kyle is the Senior Director of Product Development for the Special Needs Initiative at United Health Care. She creates strategic vision and brings that to life through program design and development. Her role includes advising and collaborating internally and externally on projects to ensure the delivery of high quality, meaningful services that support children with special health care needs and their families. She works with a particular focus on the development of a portfolio of strategic care delivery solutions that seek to engage and collaborate with a variety of key stakeholders including families, provider organizations, advocates as well as public and private sector champions for children and youth with special health care needs. Prior to joining UHC Ms. Kyle worked at Children’s Minnesota for 15 years providing direct care to children and families in a variety of acute care settings. During her tenure at Children’s Minnesota, she served as a leader for the Minnesota Nurses Association and worked on behalf of nurses at Children’s and across the Twin Cities.
Dr. Jennifer Lail serves as AVP for Chronic Care Systems in the James Anderson Center for Health Systems Excellence at CCHMC. Dr. Lail is a primary care pediatrician in CCHMC’s Complex Care Clinic, and leads Strategy and Quality Improvement with the Complex Care population. Implementation of practice strategies that improve care for children and youth with chronic conditions has been her interest, including development of clinical registries, care coordination programs, family engagement, pre-visit care planning, improved communications with subspecialists and transition planning for CSHCN. She is a current member of the AAP’s Council on Children with Disabilities, the Advisory and Strategic Committees of the National Center for Medical Home Implementation, Quality Improvement Innovation Network, and CCHMC’s Ambulatory Leadership Council. She serves as faculty advisor for both the OHIO Perinatal Quality Collaborative and the Sickle Cell Treatment and Outcomes Research in the Midwest groups, as well as the Collaborative for Improvement and Innovation Network to Advance Care for Children with Medical Complexity.
Lisa Lambert is the Executive Director of Parent/Professional Advocacy League, a family-run organization focused on children’s mental health. She has created a statewide peer to peer network for family partners and instituted monthly “content” trainings, which are highly successful, as well as using highly effective social media strategies to connect families and share information. She has created numerous guides, including a guide for law enforcement and a handbook for parents of transition age youth. She serves on several state and national committees and speaks widely across her state and nationally. Ms. Lambert authored several studies which collected data from families on topics ranging from privacy and electronic health records to access to services and is the co-author of several papers focused on the key role of families.
Dr. Beth McManus is a child health services researcher whose research focuses on systems of care for very young children with special health care needs. She is particularly interested in access to, effectiveness, and cost-effectiveness of Part C early intervention services for infants and toddlers with developmental delays and disabilities. Beth received her ScD in Developmental Epidemiology from the Harvard School of Public Health and an MPH in Maternal and Child Health and a MS in Physical Therapy from Boston University. She is a former Robert Wood Johnson Health and Society Scholar at the University of Wisconsin-Madison. Currently, she is an Associate Professor in the Department of Health Systems, Management and Policy at Colorado School of Public Health. Beth also maintains an active clinical practice as a pediatric physical therapist in the Neonatal Intensive Care Unit at Children’s Hospital Colorado.
Megumi Okumura, MD MAS FAAP is Associate Professor of Pediatrics and Internal Medicine at the University of California, San Francisco. She is a health services researcher, dual boarded in internal medicine and pediatrics. She was a Robert Wood Johnson Clinical Scholar, completed a fellowship in Health Policy at UCSF and received her Master’s in Implementation and Dissemination Sciences at UCSF. Her studies are aimed at formulating interventions that will address barriers and facilitators to chronic illness care for children with special health care needs as they transition from pediatric to adult-focused health care. Dr. Okumura’s research goal is to generate rigorous evidence to improve the quality of health care provided to patients through implementation of interventions that integrate patients, health care providers, health care systems and community organizations. She is also the scientific co-chair of the Healthcare Transition Research Consortium. In addition to her research work, she sees patients in her primary care internal medicine practice, focusing on adults with childhood-onset chronic conditions transferring from pediatrics to adult focused health care.
Edward Schor, MD is Senior Vice President at the Lucile Packard Foundation for Children’s Health whose grantmaking focuses on health care system improvement for children with special health care needs. There he initiated the development of national consensus standards for systems of care for children with special health care needs, supported the development of guidance for care planning, and promoted a statewide family advocacy training program to increase family engagement in health care and health policy. Dr. Schor, a pediatrician, has held a number of positions in pediatric practice, academic pediatrics, health services research, and foundations. He served as medical director and policy director for the Iowa Department of Public Health where he led the development of the Iowa Survey of Children and Families, the basis for the National Survey of Child Health. Dr. Schor received post-doctoral training in social and behavioral sciences and has a special interest in the social determinants of child health and family functioning. He published Family Pediatrics, the report of the Task Force on the Family of the American Academy of Pediatrics.
Dr. Edwin Simpser is President & CEO of St. Mary’s Healthcare System for Children in New York. St. Mary’s is a Pediatric post-acute healthcare system providing inpatient, day patient, preschool, case management and homecare services to over 2000 Children with Special Healthcare Needs. Dr. Simpser is a Pediatric Gastroenterologist whose early academic career focused on GI & Nutrition care for children with all disease states and he quickly development a focus and expertise in the care for children with Medical Complexity. Dr. Simpser is a tireless advocate for services and program development for medically complex children and their families. He has been involved in numerous local, regional, and national committees and processes around this population. The unique nature of St. Mary’s provides him a broad perspective on the healthcare continuum and on the needs of these children and their families.
Renee is the Section Chief of General Pediatrics at St. Christopher’s Hospital for Children. She is Medical Director of the Center for Children and Youth with Special Health Care Needs at St. Christopher’s Hospital for Children in Philadelphia, where she oversees a primary care practice dedicated to CYSHCN, including an FASD program/NICU primary care follow up program and grants. Her faculty appointments include: Associate Professor at Drexel University School of Public Health (Department of Community, Health and Prevention) and Drexel University College of Medicine (Department of Pediatrics). She is the Medical Director of the Pennsylvania Medical Home Program and transition program, a statewide program for pediatric and family practices across Pennsylvania. Her research and clinical work around care coordination, medical home, and children and youth with special health care needs have been presented and published in multiple national forums.
Patience H. White, MD, MA, FAAP, FACP is co -Director of Got Transition, the federally funded national resource center on transition and Professor of Medicine and Pediatrics at George Washington School of Medicine and Health Sciences. Throughout her career, she has been active in academic medicine, clinical care, research, and public policy. As part of her work at Got Transition, she is actively involved in providing technical assistance to integrated health care delivery systems, health plans, Title V agencies, pediatric and adult primary and specialty care practices, patient organizations and health provider professional societies. She has published many peer reviewed articles on transition, was a co-author of the 2011 AAP, AAFP, and ACP joint clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home” and is leading the update of the AAP/ACP/AAFP Clinical Report to be published in 2018. She received her MD degree from Harvard Medical School and her master’s in education from GWU School of Education.