At a gathering of Washington health care journalists last week, panelists, including myself, talked about the challenges of covering this year’s version of the health care debate. Too much horse race coverage; too few details; hard to make stuff understandable; etc., etc. “Readers want a conversational connection with people who know,” suggested someone in the audience. (Indeed, they do.) Then Noam Levy, who has been covering health care politics for the Los Angeles Times, mentioned that his paper had done a story on medical homes. Medical homes, I thought. What kind of conversational connection does the public have with that?
Not much, it turns out. The concept of medical homes, which originated with the American Academy of Pediatrics in the 1960s to refer to a central location for archiving a child’s records, has morphed into something much bigger. A recent statement by the Academy and other doctor specialty groups talked about a medical home as an approach to providing comprehensive primary care with patients by way of an ongoing relationship with a personal physician and coordinated and enhanced access to care—“a model of delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective.” The statement also tried to build a case for paying doctors more money. The docs, it seems, want to be paid for “the added value provided to patients who have a patient-centered medical home,” and their statement laid out a nine-bullet-point framework for getting more money, including separate fee-for-service payments for face-to-face visits.
I never could see the difference between a medical home and the old-fashioned family doctor I grew up with out on the Great Plains. Apparently the public can’t, either. A study published last winter in the peer-reviewed Permanente Journal—published by the Permanente Press affiliated with Kaiser Permanente, the big HMO—found that the public has a very different understanding of the terms and concepts involved in health care than the policy gurus who toss them out. And the press who dutifully quote them. Researchers concluded:
American health care consumers do not speak our dialect, and they perceive and understand our health care system in a very different way.
What a surprise! And here’s where such terms as “medical homes”—along with “medical decision support,” “treatment guidelines,” “best practices,” “evidence-based medicine,” and “accountable”—come in. In fact, the public is having a very bad reaction to all these prescriptions for change. Focus group participants quoted in the Permanente study equated medical homes to nursing homes and home health care. “First you go to the medical home and then you go to the funeral home,” said one focus group member. Another said the term “just gives me the creeps.” People associated “medical decision support,” the new buzz phrase meaning doctors and patients jointly arriving at treatment decisions, with end-of-life decisions. “I don’t want my doctor to support my medical decision,” explained one participant. “I want my doctor to make the medical decision.”
‘Treatment guidelines’—well, they were perceived as rigid, limited, and driven by cost. ‘Evidence-based medicine’—that notion that the pols are peddling to bring down health care costs—did not get high marks, either. Most focus group participants were skeptical, considering it a “one-size-fits-all” approach that would undermine personalized medical care. One said: “I thought evidence-based medicine was silly. If medicine isn’t based on evidence, what is it based on?” And ‘accountable’—how many times have we heard that one? Accountable to whom—insurance companies, doctors, drug companies, shareholders, patients, cronies in the policy community? “I get a middle-of-the-road feeling,” a participant told researchers. “I hear it so much in politics. He has to be held accountable for this or else.” Another said: “I think it is kind of scary. It is telling me…I am going to go there and something bad is going to happen, and someone has to be held accountable for it.”
‘Value’ was another term the researchers examined. It got mixed reviews. Some thought it meant that patients were valuable, but others thought it implied cost-effectiveness or low cost. “It reminded me of a shirt,” one participant explained. Another put it this way: “I don’t rate a doctor in terms of whether she’s a good value for my dollar.”
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I never could see the difference between a medical home and the old-fashioned family doctor I grew up with out on the Great Plains.
The term "medical home" has been in common use for a long time. And if you take the term out of politics people actually don't have a negative reaction to it. Your "medical home" WAS your old-fashioned family doctor, but for people who must navigate through emergency rooms, public clinics, free clinics, and transient health providers, the term takes on a very serious non-political meaning and people are happy when they find one.
Take for instance a child who suffers from asthma. It is essential that parents find a "medical home," among a myriad of temporary providers, who can help manage the condition. It is the only way for the child to successfully complete school. Asthma is the #1 cause of missed school days. Without a "medical home" the family is going through a constant shuffle of diagnosis and re-diagnosis, different courses of treatments, missed school days, and emergency hospitalizations due to the unmanaged condition. Do you realize that in the year 2009 in the United States of America, children actually die from asthma, a treatable, manageable medical condition? The same goes for a child with diabetes and having a "medical home."
With the current crisis in health care access and health insurance, the "medical home" is often NOT the old-fashioned family doctor of your childhood, because that model doesn't exist for a large percentage of the population any more.
"Treatment guidelines" are a staple of sound medical practice and I cannot understand what issue you might have with that, or the term "evidence-based medicine" which obviously means treatment based on sound medical practices shown through scientific research to be effective.
The statement from AAP is meant for professional medical providers and I'm not sure why you might expect it to be immediately understandable to the average news consumer or journalist. Almost all areas of complex policy have their models and some jargon to describe those models, which may not be immediately obvious to the average news consumer. A good journalist might be able to distill some of the ideas and make them more accessible to the public, as Levy does for LAT, I happen to know. I realize that this is what you are suggesting, but I think you are overly cynical in the way you make your point.
While I don't have a big problem with the study you cited, focus groups are generally problematic if you are trying to draw any hard conclusions about how people react to the terms in question. The methodological problem with focus groups is that the process of measurement actually changes the behavior or opinion, or stiffens an amorphous opinion. So keep that in mind when reading focus group research. When a peer advisor or counselor talks to a family about finding a "medical home" the reaction is more often relief than terror.
To drag a statement out of the 1960's to suggest that these concepts are meant as a somehow subversive way for health care providers to get paid more money is just profoundly offensive, Trudy. I think the thrust of the issue was compensation for the management of complex illness. A "medical home" can save on health care expenditure by managing chronic illness below the crisis level. Just as providers would like to be compensated for counseling patients on living wills and end-of-life decisions, it isn't unreasonable to want to be compensated for managing a complex illness in a family.
A little less cynicism on your part might help shine the light. As you probably know, I am a big fan of your Town Hall series and I recommend it to everyone who will listen. If I have drawn too harsh a conclusion from your piece, please let me know.
#1 Posted by Tom, CJR on Sun 20 Sep 2009 at 06:20 PM
I'd like to expand for you the concept of "medical home" if I may.
The management of childhood asthma can be challenging and it can mean literally the difference between a life of debilitating chronic disease, or, rarely even death, and a healthy child who is able to participate in school activities and have a normal childhood, and even excel in sports. Jackie Joyner Kersee had lifelong asthma.
Medical management of childhood asthma involves the consistent monitoring of lung capacity over the course of childhood. The progress or decline in lung function determines the course of treatment or necessitates a change of medication. The medication regimen can be complex and the family must be taught which inhaler to use daily, and which should be used for a flare-up. Some of the inhalers are steroid-based and have severe side-effects for some children that affect their schoolwork and their peer relationships. In addition, there must be periodic drug holidays, in which the child must be monitored for deterioration of lung function.("Evidence-based medicine" dictating the "treatment guidelines" in other words.)
You can see why a consistent "medical home" is essential to the well-being of the child, and how crucial the ability to involve the entire family in the management of the disease. What happens with children whose family lack adequate access to health care, it is often the school nurse and mobile medical clinics who perform the function of your old-fashioned family doctor. This is true for urban children, and also for rural children, though the logistics are probably different.
But school nurses are often the first to go in a budget crisis like California is experiencing. The mobile health clinics go through funding and defunding cycles -- one operation closes down and a few months or a few years later another operation takes its place. Meanwhile, there may be emergency room visits or late-night urgent care visits, or hospitalizations for severe attacks.
The medications are expensive. Inhalers, which asthma sufferers have a minimum of two types, cost in the hundreds of dollars each. Someone needs to be available to keep the family up to date on the lung functions, the medication regimen, the logistics of navigating the medical system, to teach the family and the child how to perform the breathing tests, what the results mean and what to do when, how to use the inhalers, how to integrate the other family needs with the management of an asthmatic child.
So you can probably see the advantage of having a "home" where the child's medical records are available for the myriad of health care providers who see the child throughout the childhood. It is essential, and can literally be life and death for the child.
Now, Republicans in Congress seem to be pretty indifferent to these challenges. Our Republican governor is indifferent to these challenges. But journalists don't have to be. You don't have to write a heart-wrenching story about these kids, but at the very least I would ask that you put your cynicism aside for long enough to understand that these aren't just fuzzy concepts at the policy level for you to become impatient about.
#2 Posted by Tom, CJR on Sun 20 Sep 2009 at 08:47 PM
Tom: Thanks for your comments. I appreciate them. The point of my post was not to be cynical but to point out that no matter how good these concepts are medically speaking, they are not seen that way by the public, and the professionals--the doctors as well as the policy researchers must do a better job of saying what they mean. Journalists also need to do that which was the message I conveyed.
No one would argue that focus group responses are the definitive word. They have lots of limitations, but they do give some clues to how people respond and what they are thinking. That's not unlike the clues we are getting from the Town Hall meetings which point out that most people don't understand the fine points of health care reform. Speaking of the Town Halls, we will have more coming shortly. I hope you continue to enjoy them.
Trudy
#3 Posted by Trudy Lieberman, CJR on Mon 21 Sep 2009 at 07:12 AM
Thanks for responding Trudy.
Actually, the term "medical home" WAS designed to be an accessible term for the concept that I described, at least to the public that I live among. For a wide swath of families, asking "who's your doctor?" has no meaning. Often they don't have a doctor, they see a physician assistant or nurse, or if they DO see a doctor, it's a different one each time, and they don't even catch the name. I'm not just talking about the poor in public clinics, it is this way in HMOs and medical practices as well.
So "who is your doctor?" is a defunct concept. Then you ask "what is your usual source of care?" Well, many times for too many people, it is the emergency room.So that's not helpful when you are trying to provide some continuity of treatment.
I point this out not to tug at your heartstrings. You and I agree that journalists* have done a very poor job in informing the public about health care issues. I am suggesting that by necessity new terminology has evolved in order to describe new realities. I can't really think of a simpler, more accessible way to describe a medical home as I have described the concept than "medical home." Perhaps you can make some suggestions.
Let me also point out that discussing a "medical home" in policy circles with respect to reform as something retrograde like "seeing the family doctor" borders on the disingenuous. I'm not sure how you can reconcile the need to accurately describe reality when debating policy and reform, and the natural tendency to resist learning and using new terminology. But that's kind of the journalist's job, isn't it?
*I want to note here the excellence of the medical reporters at Los Angeles Times. Their coverage of medical issues is first-rate. The coverage they provide is accessible, accurate, responsible, diverse, and always interesting but never sensationalized. If they were leading the health insurance reform dialogue inside the beltway, the conversation would be far different and much, much more informative and constructive. Kudos to them.
#4 Posted by Tom, CJR on Mon 21 Sep 2009 at 08:45 AM
Thanks. All this discussion should be very helpful to reporters who want to understand what all this means.
Trudy
#5 Posted by trudy lieberman, CJR on Mon 21 Sep 2009 at 08:54 AM
Reminds me of the good old days when I entered medicine because it was a profession. There didn't seem to be as much jargon about, in those days, and there was great apprehension about socialized medicine sweeping the country with Medicare, and in those days, we had county hospitals and physicians donated their care to charity patients. There was even medical courtesy and patients tended to chose their own physicians, and physicians had practices.
The satisfactions were greater, though the technology was much less. Medical education was far less expensive, and doctors earned less and were happier. The good old days, except that now, those with access to medical care live longer through that technology, and our medical system has provided rewards for procedures, not for patient contact and face to face care.
Remember when psychiatrists actually offered therapy to their patients rather than chemicals. I'd love to read what an intelligent reporter has discovered about what should be a fair salary to physicians, and what the cost of a medical education should be.
As a nephrologist, I feel that we need a lot more doctors who talk to patients like the old GP's were said to do, in the good old days where patients actually picked their physicians and physicians had practices, and medicine was a profession..... but, recognize that this impersonalized, inefficient, horrendously expensive health care field extends the lives, and sometimes the quality of the lives, of those with access to what passes for health care.
#6 Posted by Laurence Lewin, M.D., CJR on Tue 17 Nov 2009 at 11:22 PM