The frustration used to start on the phone.
Every time Donna Dunlop called her daughter's pediatrician, she started from scratch, describing the girl's complex history of seizures and other neurological problems to someone in a remote office who had never heard of her.
Specialists arrived at appointments clutching Elena Spahr's medical history — a stack of bulging folders well over a foot high — yet failing to grasp the bigger picture. An oblivious X-ray technician once asked her mother, "Can you just have her stand over here?"
"The kid's in a wheelchair and completely unable to do that," Dunlop said. "It seems small, and yet I can't tell you how hard it is when no one has been clued into the reality that child faces."
Several years later, Elena, 9, still has no diagnosis, can't talk or walk and relies on her parents for all her basic needs. But her parents now can rely on her pediatrician's office to help them connect the complicated dots between specialists, schools and various support networks.
"It was a pretty typical medical practice then," she said. "Now, it really is a medical home."
The term "medical home" describes not just a physical place, but the people who provide care and how they do it. In an ideal medical home, patients and parents feel respected. Staffers take a proactive, team approach to helping families coordinate information from multiple providers and direct them to other resources in the community.
In the words of the American Academy of Pediatrics, patient care in a medical home is "accessible, continuous, comprehensive, family centered, coordinated, compassionate and culturally effective."
It sounds like common sense, but it's not common practice, said Dr. Joseph Hagan, co-chairman of the academy's Bright Futures Education Center. In guidelines it is writing for the federal government, the center will recommend that well-child visits for patients up to age 21 be provided in the context of a medical home.
"The idea of a medical home is maybe not one-stop shopping on-site, but one place or group of people you can count on to help you address whatever the medical issue is," said Hagan, a pediatrician in Burlington, Vt.
Though the academy coined the term "medical home" in the 1960s, and formally defined it in 1992, the concept didn't start catching on until the academy adopted it as its standard of care in 2002. Since then, certifying organizations for family physicians and internists have embraced the model.
The U.S. Maternal Child and Health Bureau has made the medical home part of its national agenda for states, and ensuring that every child with special health care needs has a medical home is one of six top objectives for states under the president's New Freedom Initiative.
"The medical home is the brand name for 21st century primary health care," said Dr. Carl Cooley. "It's no longer a decision to become a medical home. You are a medical home, and it's a question of how good of a medical home do you want to become?"
Cooley is co-director of the Center for Medical Home Improvement in Greenfield, which has worked with doctors' practices and state health departments around the country since 1996 on medical homes.
The first step is setting up a team of providers, staff and parents, and assessing the practice's strengths and weaknesses. Next comes identifying children who would benefit most from the approach and interviewing their families. The eventual result is an individualized plan for each patient so that anyone he or she sees has the same information and is working toward the same goals.
For Dunlop, that means her calls go directly to a nurse familiar with her daughter's condition. Every provider Elena sees has an electronic copy of her medical records and care plan. And her pediatrician is the "central point person" who helps bring together everything they learn from other doctors.
"She's sort of like the universal translator. We can go to her and say, 'OK, we've heard this here and that there.' She doesn't always have the answers, but sometimes what she has done is called the docs and talked to them in doc language, or she helps us sort through what we already know."
Dr. Greg Prazer, who oversees medical home improvement efforts at Exeter Pediatric Associates, said the biggest shift is the much larger role for parents in their children's care. That starts with parents putting their main concerns in writing.
"Physicians always have a huge agenda for what they want to talk about," he said. "It's important for parents to set the agenda."
His team is working to improve communication among schools, families, health care providers and other agencies.
"This has absolutely changed how I feel about practicing," he said. "Working with the parent partners has really rejuvenated me."
The Center for Medical Home Improvement is studying whether medical homes lead to better results and save money. The results aren't in yet, but smaller studies have demonstrated reductions in emergency visits, unplanned hospital stays and dependence on specialty care, Cooley said.
He is encouraged that Medicare is developing reimbursement codes for care coordination for the elderly.
"What Medicare adopts tends to be adopted by Medicaid, and eventually by private payers," Cooley said, "so I think we're on the threshold of seeing care coordination as a reimbursable service."