For more on building a good relationship with your child’s doctor, see the May-June 2008 Quest for “Doctors, Parents and Kids.”
Wouldn't it be nice if you had an entire medical team looking out for your child? If you could call or e-mail one of those team members on a Sunday or late at night for advice on your son's or daughter's symptoms? If your child's pediatrician and specialists all knew "the whole story" of your child and his or her illness, and would partner with you to secure the specialists and services your child requires?
Wouldn't it be nice if the ongoing medical care for your child with special health care needs could be something you don't have to pursue alone?
With a medical home, all those ifs could turn into certainties.
What's the idea?
The origins of the medical home concept date back to the 1960s, when the American Academy of Pediatrics (AAP) proposed that children's medical records be archived in a central location. Since then the concept has broadened and evolved. Currently, as described by the AAP, the medical home is "a model of delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective."
The American Academy of Family Physicians (AAFP) developed a "personal medical home" model in 2004, and in 2006 the American College of Physicians (ACP) developed their own "advanced medical home" model.
Whatever the details, the medical home is not a location – an office, hospital or house – but rather a method for managing well-child, acute and chronic medical care for children from the time they're born until they transition to adulthood.
Focus is placed on primary care in which the physician works with a team of medical professionals and with the family to anticipate, plan for and secure:
In a practice designated as a medical home, staff will know patients and their histories; recognize the value and importance of the family's role as the child's primary caregiver; and apply a team approach to providing safe and efficient care.
Robert Crittenden, chief of family medicine at Harborview Medical Center in Seattle, likens the role of the pediatrician or primary care physician in the medical home model to that of the pilot of an airplane.
"If the pilot did not have an airplane around them that had warnings, feedback systems, sophisticated guidance systems, speakers that automatically said, 'pull up,' etc., we would have a lot of crashes," he says. "Similarly, a personal physician can be the best doctor, but without the system around them, he will overlook something, order a conflicting med, not have time to query about some critical bit of evidence," leading to less-than-optimal outcomes.
"That system," Crittenden adds, "is based on a team around the doctor or nurse, a medical records system that is ‘smart’ (usually electronic) and connections to other providers that allow easy consults and referrals, if needed."
The benefits, suggests Steve Schoenbaum, executive vice president for programs for The Commonwealth Fund, "are above and beyond those of just having a 'regular doctor.'"
The nuts and bolts
In March, the AAFP, AAP, ACP and the American Osteopathic Association (AOA) released the Joint Principles of the Patient-Centered Medical Home.
"We used to say a medical home is not a building or a place," says Amy Kephart, technical assistance coordinator for the National Center of Medical Home Initiatives. With the new principles, "we're trying to define how you have a medical home."
The principles describe the ongoing relationship between the patient (and the patient's family, if applicable) and the personal physician, who serves as the starting point for information, services and referrals.
In a physician-directed medical practice, the physician leads the medical team charged with caring for individuals, and under the principle of whole-person orientation, cares for, or arranges for others to care for, all the patient's health care and associated support.
Coordinated and/or integrated care is meant to ensure patients receive necessary services and subspecialty care throughout the health care system and in their community.
Enhanced access promotes easier contact and better communication between families and physicians with such features as same-day and walk-in scheduling, and e-mail or Internet communication.
Quality and safety play a key role in all aspects of care, and payment should take into account the efforts physicians expend in coordination of care, in addition to face-to-face visits and fees for services.
Additionally, "there are four critical principles that are addressed in the medical home," Kephart notes. Those four principles, found in the preamble to the March consensus statement are:
What does it mean for families?
"A medical home provides families with a go-to medical and holistic, community-based resource, set of contacts and system of support," says Jeanne McAllister, director for the Center for Medical Home Improvement at Crotched Mountain Foundation.
According to McAllister, a medical home:
In the medical home setting, the patient may see any physician they choose, without referral or permission. The pediatrician or personal physician provides advice and suggestions, and helps the family select the members of the health care team. Goals for care are incorporated into a plan that everyone follows.
It’s important that a practice meets the criteria for providing a medical home, but even more important is patient perception.
"A medical home exists in the eyes of the patient and family," says Schoenbaum.
Schoenbaum explains that it's "extremely important" that physicians and medical practices provide services that will enhance coordination of care, and have tools such as electronic media records, and good after-hours and weekend coverage.
"We think that having such services make it more likely that the patient or family will perceive having a medical home," he says, noting, "ultimately one needs feedback from the patient and family that they think they have a medical home."
What are the potential drawbacks?
The medical home concept places emphasis on primary care, and on the pediatrician or family practitioner to coordinate that care. In the case of children with special health care needs, who tend to require more extensive and sophisticated care, patients and families often prefer advice and coaching to come from specialists, not primary care physicians.
Additionally, families and physicians alike worry that pediatricians won't have the training or ability to handle chronic illness and disease, a problem that could result in higher incidence of misdiagnosis in chronic care patients.
McAllister notes that, "The name 'medical home' is always a stumbling block, simply because people don't grasp what it means. There are misconceptions – is it a nursing home? A home with lots of medical equipment?"
Another problem is convincing families to make changes to any system they've managed to make work for them.
"When families do not have a true medical home and have cobbled together a support system that is working (but may not emphasize primary care) they are loathe to undo what is assembled – so the shift in emphasis can be a difficult one," McAllister says. "New expectations need to be cultivated around primary care."
Where can I find a medical home?
Finding a medical home may take some effort, as implementation and acceptance of the concept has hit some stumbling blocks and remains in flux.
"There have been some examples of medical homes [around] for a long time," says Schoenbaum. "None of those is perfect, but many of the features – continuity, coordination of care, comprehensive care [and] sensitivity to cultural issues have been present in a variety of settings."
Various demonstration projects and state initiatives to try out and evaluate medical home principles are currently underway across the country.
The National Committee for Quality Assurance (NCQA) has devised the Physician Practice Connections – Patient-Centered Medical Home (PPC-PCMH) program, which lists standards for practices seeking medical home status. One of three levels of recognition are awarded to practices based on how well they meet the criteria in nine different categories such as access and communication, referral tracking and advanced electronic communications.
To find out about medical homes where you live, visit the AAP National Center of Medical Home Initiatives for Children with Special Health Care Needs, and click your state.
What's the hold-up?
Acceptance and widespread use of the medical home concept requires something of a paradigm shift in the medical care system. Much greater emphasis and importance must be placed on primary (and preventative) care. For a system that has evolved to promote pay for services (quantity) instead of preventative care (quality), bringing about such a change in perception is no easy task.
One significant challenge facing the model is the added responsibility for primary care physicians and support staff.
"They are already on the brink of true crisis due to years of undervalue and productivity pressure," McAllister says, adding that for the model to work, a system of payment must be worked out that compensates not only for face-to-face encounters but for "full episodes of care," to include such things as phone consultations, follow-up communication with other providers, education for patients and families, and e-visits.
"Care coordination is called for, is needed, is critical," McAllister explains, adding, however, that "there is no direct source of support for the unpaid time that care coordination costs." She points out that a "workforce deficit" exists as well – nurses (who often fill the role of care coordinators) are in short supply, and many choose to accept higher-paying positions in hospitals or other settings.
Crittenden says the most significant challenge facing implementation of the medical home system is twofold, lying with reluctance of payers to "invest before seeing savings," and a lack of clear understanding in the general public.
Payers, Crittenden says, "depend on actuaries who live looking in the rearview mirror and can only predict what is and has been." But, he adds, "A number of rigorous evaluations underway now may help."
When it comes to public understanding, Crittenden explains, people strongly support having a personal physician, but "they really don't know what it takes to do good healthcare – nor should they."
Children with special health care needs require more from physicians in terms of time, treatments and follow-up, and "the team is more effective than the individual in accomplishing this – if they work effectively together, understand the evidence and the people, and act on that knowledge," Crittenden says. But "the public really doesn't understand this and uses the proxy of 'good doctor.'"
Some of the state programs and demonstrations currently going on may help sway payers and patients alike to the medical home model, but only time will tell.
"For the medical home to be a true coordinating hub," says McAllister, "all stakeholders must acknowledge the value of primary care and invest in its full development."
Care notebooks provide a place for parents to maintain an organized and easily referenced record of their child's ongoing medical care. With input from medical staff, parents can document their son or daughter's doctor visits, check-ups, physician reports, therapies, medical history and more.
Now, at a new Web site, Build Your Own Care Notebook, parents can download care notebook subsections that have relevance for their family, and custom build a notebook tailored for their child. At the site, parents will find links to care notebooks offered by various organizations that they can use as references, and an online tutorial that provides instructions for how to use the notebook.
Learn more …
Want to learn more about the Medical Home concept? Get started with the following resources: