Two-year-old Aliyah,* born prematurely, has a neurological condition called cerebral palsy. She also has chronic lung disease of prematurity and sickle cell disease, a blood condition. In addition to her pediatrician, she sees a neurologist, a pulmonologist, a hematologist, an ophthalmologist, a cardiologist, and an orthopedist. Aliyah’s mother has two other children, one of whom is a newborn. “I have over 30 doctor’s appointments this month,” Aliyah’s mother said, “I don’t know how I’d make this work without our team here.”
Aliyah’s mother is referring to St. Christopher’s Center for Children and Youth with Special Health Care Needs, a family-centered medical home. A medical home is a model of health care service delivery in which a primary care pediatrician oversees the patient’s well-being and works in close communication and coordination with all other specialists, therapists, community services, and medical equipment providers involved in caring for the patient. All team members regularly communicate with each other.
The American Academy of Pediatrics (AAP) identifies coordinated, compassionate, culturally competent, comprehensive, accessible, and family-centered care as fundamental to the medical home model. Many medical homes also have additional on-site staff who help families navigate the health care system and connect them to support services personnel such as care coordinators, community health workers (CHWs), and social workers as well as medical-legal partnerships. All medical homes have close ties with community-based services. Some practices even form direct partnerships with these agencies. St. Christopher’s Hospital for Children (www.stchristophershospital.com) has a WIC (Women, Infants, and Children) office at the hospital.
The medical home model was initially designed for children with special health care needs and is now the AAP’s standard of health care for all children because it is associated with improved child health outcomes, more comprehensive support for families, and reduced health expenditures. The medical home model allows the care team to make sure that Aliyah’s appointments with her specialists are on the same day to prevent Aliyah’s mother from having to take too many days off from work; that the clinic is in close communication with Aliyah’s medical day care about any changes to her care plan; that Aliyah’s family has the food, clothes, and heat needed for the cold weather; and that Aliyah’s mother has the support she needs in communicating with insurance, pharmacy, and early intervention service providers to ensure Aliyah is getting the home nursing, medications, and therapies she needs.
All children deserve this level of comprehensive, coordinated, and family-centered care. The Pennsylvania Medical Home Initiative (PA-MHI) is a statewide quality-improvement program developed in 2003 with the mission of empowering as many practices as possible to implement the medical home model (www.pamedicalhome.org). The PA-MHI currently collaborates with over 150 practices to facilitate medical home adoption, implementation, and evaluation in accordance with AAP policy recommendations using the Educating Physicians in their Communities model (EPIC). These practices encompass a broad range of practice geographies, types, and sizes and care for families spanning a wide spectrum of ages, races, languages, and socioeconomic statuses. Across the PA-MHI network, for instance, nearly half of the patients have public insurance such as CHIP or Medicaid.
The PA-MHI is housed within the Pennsylvania chapter of the AAP and is funded by the Pennsylvania Department of Health Title V Grant and the Health Resources and Services Administration Maternal and Child Health Bureau. The program works with individual practices to establish medical home teams that receive training and on-site technical assistance from the PA-MHI team via a standardized implementation guide and five-session training series enhancing care coordination (defined by the AAP as patient- and family-centered, team-based activity designed to meet children’s needs while enhancing families’ caregiving capabilities) and family-centered care activities. The PA-MHI also offers staff-wide training, educational opportunities such as regional meetings and webinars, assistance with connecting to community partners, support with care integration across specialties, support in developing transition teams to help adolescents prepare to enter the adult health care system, and evidence-driven assessment tools to measure progress and quality improvement.
In addition to offering participating practices performance measurement tools, PA-MHI collects ongoing data on family experience, care coordination activities and outcomes, Medical Home Index scores (an assessment evaluating levels of medical home implementation), adolescent transition planning, development of care plans, cost and return-on-investment analyses, and quality-improvement cycles from all practices in the network. These data drive improvements in service delivery and program implementation both at the individual practice level and at the level of the parent program. The Pennsylvania Medical Home Initiative is taking steps every day toward the goal of enabling all children in Pennsylvania to have access to a medical home.
Though Aliyah’s siblings do not have special health care needs, the Center for Children and Youth with Special Health Care Needs at St. Christopher’s Hospital for Children provides primary care services for them, offering the best support possible for the entire family and embracing family-centered care.
*Name, identity, and characteristics changed to protect patient privacy.
Rebecca Golden is a medical student at Drexel University College of Medicine and a research assistant at St. Christopher’s Hospital for Children. Eileen Thompson RN, BSN is the Program Director for Pennsylvania Medical Home Initiative, a program of the Pennsylvania Chapter of the American Academy of Pediatrics. Dr. Renee Turchi, MD, MPH is the Section Chief of General Pediatrics at St. Christopher’s Hospital for Children, the Medical Director of the Center for Children and Youth with Special Health Care Needs at St. Christopher’s Hospital Children, and an Associate Professor at Drexel University College of Medicine and Dornsife School of Public Health.