By W. Carl Cooley, MD, Medical Director, Crotched Mountain Foundation
Donna Galvin has started to look forward rather than back, started to re-focus after the devastating news that her new baby son, Nicholas, has Down syndrome. At a week of age, Nick is having his first visit to the pediatrician since leaving the hospital where he was born. Nick has been doing pretty well — feeding and sleeping like any baby — but he has a heart defect that may require surgery and he’ll need some kind of developmental therapy — early intervention, Donna recalls. Now Dr. Marzelli, the pediatrician, is explaining that her office will be Nick’s primary care medical home.
“Home! Are you saying that he needs to be placed in a home?”
Smiling, Dr. Marzelli explains that a medical home means home in the sense of a home-base or headquarters for Nick’s health care. It’s also a home in the sense of hospitality where she and Nick can feel comfortable, welcomed and known – where they feel “at home.”
Dr. Marzelli goes on to describe how Nick will receive all of the usual check-ups, immunizations and preventive care provided to all children. But, because he is a baby with some “special health care needs,” the medical home also will provide more care coordination. Dr. Marzelli will work with Donna to develop a written care plan that will be part of Nick’s medical record. It will also be “portable” so that Donna will have her own copy. The care plan will be like the script for Nick’s health care and for some of his office visits when the plan will be continuously reviewed and updated. Nick also will be part of the office’s registry of children with special health care needs. The office will use the registry to track any special tests or specialist consultations that Nick may need related to having DS or his heart defect.
Towards the end of the visit, Dr. Marzelli introduces Donna and Nick to Sandy Butcher, a nurse and the office’s care coordinator. Sandy will be the “go to” person at the office whenever Donna has questions about community resources, connections with other parents, sources of information about DS, or just help figuring out what Nick might need. Today, Sandy explains that Nick is entitled to early intervention services and helps with a referral to the local early intervention program. Sandy provides Donna with a business card with her direct telephone line and email address.
Donna’s experience with a primary care medical home will become increasingly common over the next decade. Primary care pediatricians and family physicians are transforming their work and offices from the traditional model of episodic visits for check-ups and acute illness care into a proactive, coordinated partnership with patients and families in which care is comprehensive, continuous and culturally effective. Special tests or care that might be needed on a regular basis (hearing testing, thyroid testing, annual flu shots) are tracked for all of the children with DS in the practice to insure they are up-to-date.
Why change primary care now?
What has led to the need to transform or re-design primary care? (Donna has always felt that Dr. Marzelli was a good doctor who provided excellent care.) First, something is basically wrong with the health care system in the United States. The U.S. spends twice as much on health care as every other industrialized country but ranks lower than most (slightly above Slovenia and below Portugal) in terms of results. Besides having fewer uninsured people, health care in other industrialized countries is characterized by the central role of the primary care physician — 70 percent of physicians in European countries are primary care physicians while just 30 percent of U.S. physicians provide primary care. With less access to primary care, expensive emergency rooms are used as a substitute. This in turn, leads to unnecessary tests and, sometimes, unplanned hospitalizations.
Second, primary care has become a much less attractive career for medical students in the U.S., who regard primary care as a hectic, rat race of short, unsatisfying encounters with patients. Medical students finish their training with enormous, six-figure debts, which makes the much lower earnings of a primary care physician less attractive. Last year, just seven percent of U.S. medical students planned a career in primary care.
Finally, since most American’s obtain health insurance through employment, many large companies like IBM, Intel, and Boeing plan on higher quality primary care for their employees. These multinational corporations have noticed they have to pay much less for employee health care outside of the U.S. More than half of the largest U.S. corporations are considering the direct provision of primary care to their employees through worksite primary care clinics by 2010.
Foundations of the Medical Home
The Medical Home concept originated with the American Academy of Pediatrics (AAP) in 1965, but the model did not begin to catch on until the 1990s with a partnership between the AAP and the U.S. Maternal and Child Health Bureau. Between 1995 and 2005, pediatricians began using the medical home model to improve care for children with chronic conditions. In 2003, the Center for Medical Home Improvement developed the Medical Home Index to measure the “medical homeness” of a pediatric practice and pioneered quality improvement techniques to help practices make this transformation. Gradually, it became clear that a medical home provided higher quality primary care for all children not just those with special health care needs.
More recently, physicians providing primary care to adults (family physicians and internists) have recognized that the medical home model of comprehensive, continuous, coordinated care would benefit adults as well. In the spring of 2007, the AAP, the American Academy of Family Physicians, the American College of Physicians (internists), and the American Osteopathic Association adopted a joint statement declaring the patient-centered (pediatricians would say, family-centered) medical home as the gold standard of practice to which all primary care physicians should aspire. In the fall of 2008, the American Medical Association also adopted the joint statement. For the first time, all of the major national physician professional organizations were in agreement that: 1) primary care occupies a pivotal position in our health care systems; 2) there is a model of primary care that results in improved health and satisfaction outcomes; and 3) the medical home model should be the standard of practice to which primary care physicians aspire.
With physicians and employers promoting medical home, the largest private insurance companies plus Medicare and many state Medicaid programs are planning medical home pilot projects. Physicians whose practices meet basic medical home standards will be eligible for enhanced monthly payments to cover the extra services a medical home provides, such as care coordination, care planning, registries and more. Research is beginning to demonstrate that medical homes result in both better health for patients and lower costs for the health care system. Insurance companies hope that extra payments to primary care physicians will result in lower costs due to fewer emergency room visits and hospitalizations.
Looking toward the future of the Medical Home
Nick Galvin’s medical home will make meeting his health and developmental needs less confusing and frustrating for his family and more effective for him. The new electronic health record system in Dr. Marzelli’s office will contain many features of a medical home, such as Nick’s care plan and the health care guidelines and growth charts for a child with DS. Communication with specialists will be streamlined with the ability to immediately exchange electronic information. Dr. Marzelli will always be aware of the specialists’ opinions and recommendations and they will be kept up-to-date on Nick’s day-to-day health care. Dr. Marzelli is planning to add a “patient portal” to the electronic health record so that Nick’s mother can access his health record from home via the Internet and provide information, ask questions, schedule appointments or arrange for electronic prescription refills. When Nick is a teenager, Dr. Marzelli and her pediatric medical home will start working with Nick and his mother to plan for the transition of his health care to adult health care providers and an adult model of care.
For more information about the medical home model of primary care visit the Center for Medical Home Improvement website (www.medicalhomeimprovement.org) or the National Center for Medical Home Initiatives at the American Academy of Pediatrics (www.medicalhomeinfo.org).
W. Carl Cooley, MD is a developmental pediatrician in New Hampshire. He is adjunct professor of pediatrics at the Dartmouth Medical School and medical director of the Crotched Mountain Foundation. He co-founded and serves as the medical director of the Center for Medical Home Improvement and co-authored Preventive Health Care for Children with Genetic Conditions: Providing a Primary Care Medical Home, second edition, 2006, Cambridge University Press. Dr. Cooley has a 24-year-old daughter with Down syndrome who is married and lives in Concord, NH.