Portrait of health. Nyla Hagen credits her daughter Ellen’s health to the care provided by pediatrician Mary Rahrick, M.D. Ellen was born with mosaic trisomy 2.

Photo courtesy of Jennifer Nace Photography. www.jennifernace.com

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May 2008 | Back to Table of Contents

Cover Story

Coming Home

By Kim Kiser

The medical home approach takes us back to the way medicine was practiced years ago, when physicians and patients had long-standing relationships.

On the morning of March 27, Nyla Hagen got the kind of phone call any mother dreads: Her 2-year-old daughter, Ellen, was having a severe reaction to something in her baby food. Ellen had reacted to food before, but this was different. By the time Hagen, a financial advisor who lives and works in Waseca, got home, Ellen’s face was bright red and swollen, and she was wheezing.

Born with mosaic trisomy 2, Ellen has a collection of health problems in addition to food allergies—seizure disorder, abnormal brain development, hearing and vision impairments, hypotonic muscles, a diaphragmatic hernia, duodenal atresia, intestinal malrotation, severe motility problems, and minor heart defects. Hagen knew that a simple reaction could set off a deadly chain of events.

Before Hagen arrived home, the nurse who was caring for Ellen had paged Mary Rahrick, M.D., Ellen’s pediatrician at nearby Owatonna Clinic. Rahrick—the point-person for all of Ellen’s care—took charge, telling the nurse to get Ellen to the emergency room at Waseca Medical Center as quickly as possible and briefing the physician assistant in the ER on Ellen’s conditions and how to stabilize the little girl to prepare her for the 14-mile ambulance ride to Owatonna Hospital, where Rahrick could then admit and observe her.

About an hour after the reaction began, Ellen was on her way to Owatonna. Twenty-four hours later, the crisis was over, and Hagen brought her daughter home. The experience was, in Hagen’s words, an example of “medical home in action.” 

Doctoring the Way It Used to Be
For Hagen, Rahrick has been a lifeline. In addition to understanding Ellen’s conditions and keeping up with her well-baby needs, arranging for appointments with specialists and discussing with them the outcome of those visits, and helping the family find home nursing and therapy in Waseca, Rahrick has been available to them day and night, especially when Hagen’s husband, Tom, a member of the Minnesota National Guard, was deployed to Iraq soon after Ellen’s birth in 2005. “Even though I was responsible for keeping Ellen alive at home, I never felt like I had nowhere to turn and I never felt hopeless,” recalls Hagen, who also has two school-aged sons. “I knew Mary would be available.”

As the only pediatrician at Owatonna Clinic until recently, Rahrick earned a reputation for her ability and willingness to work with children like Ellen. She has about 250 patients in her practice who have some kind of special need. It wasn’t until 2004, however, that Rahrick was introduced to the concept of the medical home. At the time, the Minnesota Department of Health was trying to enlist pediatricians who treat children with special health needs—everything from asthma to autism to chromosomal abnormalities—in the Medical Home Learning Collaborative, an initiative to help them learn how to better coordinate the care of such children and, ultimately, improve outcomes and save money.

The objective of medical home is simple: physicians know their patients well and coordinate their care. Doing that involves a host of tasks, including educating patients and their families about their conditions and needs, getting them services as close to home as possible, advocating for them with specialists and insurers, and keeping them from getting strangled by the web of health care bureaucracy. In many ways, it’s the way medicine was practiced years ago—when patients and their family doctor had a sort of “marriage” that transcended sickness and health.

What's in a Name?

In spite of the enthusiasm of those who’ve seen the benefits of medical home, making it the model for primary care won’t be easy. One reason is because the term “medical home” suffers from an identity crisis. “A year and a half ago, the term was relatively unknown,” says Jeff Schiff, M.D., medical director for the state of Minnesota’s health plans. The concept has been referred to as provider-directed care coordination, physician-directed care coordination, primary care coordination, patient-centered medical home, or health care home, making it difficult to determine exactly what proponents are talking about.

At a recent meeting of the Minnesota Department of Health-sponsored Medical Home Learning Collaborative, which brings together teams from 23 clinics in Minnesota that are trying to introduce the concept into their practices, a second-year pediatrics resident from the University of Minnesota shared observations from visits to a handful of the clinics taking part in the initiative. After giving a long-winded explanation of what “medical home” means, using terms such as family-centered, coordinated, compassionate, comprehensive, culturally competent, and continuous, she turned to the audience and succinctly described the approach’s identity problem: “There’s a lot of talk about medical home, but people don’t know what it means. There’s no crisp answer. But I can now say I know it when I see it.”—K.K.

Rahrick admits that before she got involved in the learning collaborative, she thought she was doing “a pretty good job” of coordinating care for her patients with special health care needs. But after one of the early educational sessions, she realized that much of the kids’ care was being managed by parents, who didn’t necessarily understand all the nuances of the child’s conditions or know where to go for appropriate care, or by specialists, who didn’t always communicate with each other or with her. “No one person knew exactly what as going on with the children,” Rahrick says.

Rahrick decided she needed to become that one person and that Owatonna Clinic needed to be her patients’ medical home. To accomplish this, she created a team that included her nurse, Pam Slagter, R.N., and two parents of children with special needs who could share their perspectives on what would make caring for their child easier. “We learned that the things physicians think are important aren’t necessarily what parents feel are their biggest needs,” Rahrick says.

Two of the parents’ biggest frustrations were getting around the clinic’s phone tree and having to retell their stories every time they took their child to the ER or saw a new specialist. So Rahrick and Slagter convinced the clinic to give them a direct phone line. They also drafted emergency care plans that include medical biographies of patients that briefly summarize their condition and their history of hospitalizations, information about the medications and therapies they’re receiving, the names of and contact information for their specialists, and their immunization records. The care plans also tell ER staff what they should or should not do. For example, if a child who is on a special diet presents with seizures, the directive might be, Don’t give her sugar and be sure to check for pneumonia.

Today, many of the children with complex conditions in Rahrick’s practice have such plans, and they continue to develop them with the parents’ input. With the parents’ permission, Rahrick and Slagter also send copies to their local ERs to keep on file. Rahrick says they’re currently developing long-term care plans that include general information about the child, the family, where the child is in school, the therapies the child is receiving, and more. These can be used by parents, specialists, therapists, and others. “It’s the child in a nutshell,” she explains.

Other changes they have made include flagging the charts of patients with complex conditions so clinic staff can schedule extra time when their parents call for appointments and corresponding regularly with specialists. Rahrick has found that better communication with specialists has cut down on visits to them in some cases, as she can work with them to adjust a medication or try a new therapy. Rahrick and Slagter also have met with school nurses, early childhood special education staff, and public health staff in order to learn about services they offer and help them monitor the children’s progress. They also surveyed area dentists to find out which ones like to work with children with complex medical conditions and which ones accept Medical Assistance in order to provide referrals. “A lot of physicians think they don’t need to get involved in medical home because they’re already doing this stuff. Truthfully, I thought that myself. But there was so much more that we needed to do, and there’s still so much more than we could do,” Rahrick says.

Small Steps, Big Rewards
Many of the ideas Rahrick and Slagter have adopted aren’t original. Rather, they’ve come from discussions that take place at the learning collaborative, which brings clinic staff and parents together three times a year to learn how to turn a medical practice into a medical home.

In April, representatives of all 23 clinics taking part in the collaborative gathered at a hotel in Plymouth to share stories about what they are doing. A few had been part of the medical home initiative since its inception and had tips to share, others, including a family medicine team from St. Cloud, were relatively new and thirsty for ideas. Suggestions included creating a list of dentists willing and able to treat kids with autism; inviting specialists in adolescent health to talk to staff about services that can help teens with health problems make the transition to adulthood; scheduling annual appointments in order to update a child’s care plan; and creating a networking group for parents who can share ideas with and offer emotional support to each other.

“The idea behind this is to try something on a very small scale, test it out, evaluate it, make changes based on that evaluation, and try it again,” says Carolyn Allshouse, who works for the Minnesota Children with Special Health Needs Section at the Minnesota Department of Health and coordinates the learning collaborative.

Allshouse keeps track of those ideas. She also collects data from surveys of parents that ask whether their child visited the ER in the last three months or missed school because of illness during that period. They also ask whether the parent missed work because their child was ill, felt they spent enough time with the physician or nurse during clinic visits, received help obtaining referrals, got the results of specialist visits, and received care plans for their children.

At the Owatonna Clinic, for example, survey responses showed the percentage of parents and children who missed school or work because of the child’s illness fell from 65 percent at the beginning of 2006 to 57 percent at the end of 2007. The number of unplanned ER visits fluctuated during that period. “If they are [in the hospital], they’re in our hospital, which is closer to home and less expensive than the tertiary care hospital,” Rahrick notes. In addition, the percentage of parents who said the doctor or nurse always explained things in a way they understood increased from 95 percent in early 2006 to 100 percent at the end of 2007, those who said the doctor always discussed the results of specialist visits increased from 33 percent to 80 percent during the same period, and the percentage who said they received help from the clinic getting special services or equipment increased from 50 percent to 75 percent.

Not all benefits of the medical home approach show up in the data, however. Since she started taking part in the initiative, Rahrick says she enjoys her work more. “There is so much satisfaction in being able to help these families. You really do develop relationships,” she says, describing how she emails parents just to see how things are going and has noticed some parents calling her less often because their kids experience fewer crises as a result of their care being better coordinated.

The Future of Primary Care?
Physician satisfaction is one reason why some see the medical home approach as the future of primary care. It’s also being touted as a way to improve the quality and efficiency of health care. During the last five years, the American Academy of Family Physicians, the American College of Physicians, and the Minnesota Chapter of the American Academy of Pediatrics, the Minnesota Academy of Family Physicians, and the Minnesota Medical Association have endorsed the idea. During the 2008 state legislative session, both the House and Senate included elements of medical home in health care reform bills.

“This is not a new concept,” says Randy Rice, M.D., a family physician at Gateway Family Health Clinic in Moose Lake and immediate past president of the Minnesota Academy of Family Physicians. He explains that the term “medical home” was actually coined by the American Academy of Pediatrics in 1967. “But I think it’s gotten lost in the shuffle over the last 20 to 30 years with the emphasis on cost containment and all the directives from insurance plans.

“As we look at transforming medicine, this is something that really is of value and should be done with all patients in all settings.” Rice explains that the nature of his small-town practice encourages long-term relationships and that seeing his patients over time makes it easier to prevent health problems such as heart disease and diabetes, or at least catch them early on. It has other benefits, too. “The trust is built up so when problems do come up, you have someone to guide you through the system and someone you trust to tell you what you really need and don’t need and who understands your personal values.” But from a bang for the buck standpoint, he says, chronic disease management is where this model “shines the greatest.” According to the Centers for Disease Control and Prevention, more than 75 percent of the $2 trillion spent on medical care in the United States each year goes for treating people with chronic diseases.

Few can argue with the fact that knowing your patients and coordinating all aspects of their care is good medical practice. But the question of who will pay for time spent talking on the phone with parents, writing emails to specialists, meeting with school nurses, and creating care plans is where the discussion about how to make it happen gets stuck.

At the April learning collaborative meeting, physicians expressed frustration about not getting support from their clinic’s administration because the work associated with making a practice a medical home takes time away from seeing patients and, thus, bringing in money. Others talked about how their clinics receive a small stipend from the state for taking part in the learning collaborative and try to recoup some of their costs by coding for care coordination. However, it becomes clear when talking with participants that the tenacity of those who are seeing results is the real currency on which medical home runs. “It’s the right thing to do,” explains Rahrick, who practices part time and admits doing much of this work on her own time.

She and others have testified before state lawmakers, urging them to include payment for medical home in their health care reform plans. In making their case, they cited the results of several demonstration projects that have shown the approach may reduce costs in a number of ways. The Pediatric Alliance for Coordinated Care, a project involving six practices in Boston, found that spending $400 a year to coordinate care for children with special health needs resulted in statistically significant decreases in hospitalizations and in the number of days parents missed work. A North Carolina Medicaid project in which physicians and the networks in which they practice each received $3 per patient per month to coordinate care and measure and report on health outcomes saved the state more than $231 million in fiscal years 2005 and 2006. Mayo Clinic found that connecting each of their employees with a personal physician and eliminating insurance co-pays for seeing those providers instead of going directly to specialists resulted in a cost savings of about $570 per person.

Several other projects that use elements of the medical home approach are getting underway this year in Minnesota in hope of proving that coordinated care is better for patients and the bottom line. In the DIAMOND project, health insurers will pay primary care clinics to coordinate care for patients with depression. Physicians who treat adults and children with complex and chronic illnesses in the state’s Medical Assistance fee-for-service program will receive approximately $50 per person per month to coordinate their care in hope of providing better, more efficient care.

But until these and other Minnesota projects demonstrate the cost savings and effectiveness of this level of care coordination, it will be up to parents such as Nyla Hagen, who give the idea of medical home a face, to convince payers and policymakers of its importance. Hagen recently shared Ellen’s story with state lawmakers during a hearing on health care reform. She described how Ellen used to scream in pain 16 hours a day and spent six of her first 12 months of life in the hospital. Because of Rahrick’s work with the family, the specialists, and others in the community, Ellen has had fewer hospitalizations, has been weaned off oxygen, and is learning to eat by mouth, rather than relying on feeding tubes, and balance while sitting. Her mother now describes Ellen, who will turn 3 this month, as a “peaceful” child.

Says Hagen: “What this has shown me is that as the health care industry changes and we’re able to solve more problems, someone needs to have the bigger vision. Someone needs to be there to advocate for the patients and help them navigate the system.” MM

Kim Kiser is associate editor of Minnesota Medicine.

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