Zackary Sholem Berger's Blog, page 37

How do we make sure healthcare is patient-centered?

A recent post on the Health Affairs Blog, Patient-Centered Care: What it Means and How to Get There, is a nice summary of the importance of a field that I happen to be involved in. However, some false notes are sounded and I think it's worthwhile to correct them. [The blog itself appears to be down at the moment, or I'd comment there too.]

At a recent symposium concerning both saving money and improving patient care, Health Affairs Editor-in Chief Susan Dentzer stated, "It is well established now that one can in fact improve the quality of health care and reduce the costs at the same time."  This is exactly the principle behind the growing movement toward patient-centered care.

First of all, I don't think it's very well established at all that improved quality can be made to co-exist with reduced cost. Certainly we hope that is true, but it doesn't seem to be established yet. For example, a recent study of  pilot projects implementing Accountable Care Organizations — the great hope of cost-cutters, care organizers, and health policy wonks everywhere – found that they…didn't save all that much money. Plenty of concern has already been aired that improved access – to care in general and preventive services in particular – will cost more on the front end, not less.

Second, I hope that the cost-cutting-and-care-improving "principle" isn't the one behind any movement toward patient-centered care. Rather, I would hope that patient-centered care is a sufficient end in itself.

Moving on, towards the end of the post, there is a paragraph that throws me for a loop.

… Doctors practicing patient-centered care have systems in place to continually measure patient perceptions.  On-line tools are often used and questions are related to patient satisfaction and other care parameters.  Moore and Wasson, in their study, The Ideal Medical Practice Model: Improving Efficiency, Quality and the Doctor-Patient Relationship, document improved patient satisfaction and education using a simple on-line tool. It is important to remember that patient-centered care revolves around continually questioning patients to assess their needs and the effectiveness of the care they are receiving.

If you follow the links, you get to a perfectly reasonable article from 2007 from the journal of the American Academy of Family Practice, which includes a on-line tool to help patients organize their care. However, the placement of this link in the paragraph implies that this is the "system[] in place to continually measure patient perception." As I pointed out in a earlier post at KevinMD, the only "system" in wide use are Press-Gany and CAHPS surveys, which tend to be mail-based, have poor response rates, and measure "patient perception" in only a limited number of domains.

So with regard to making patient-centered care a matter of prime institutional importance and real-time reporting, we still have a way to go. As large academic institutions like mine make their way towards unified EMRs, implementing measures of patient perceptions – no, not just perceptions, but actual patient-centered care – will be an important part of the change, if we can make it happen.

Modesty and halachah: a response to Rabbi Dov Linzer's article

While I have great respect for Rabbi Linzer and agree 100% with the sentiment of his editorial, it smacks of apologetics, in two flavors.

The first kind of apologetics is to downplay the multiple Talmudic references to women *as* sexual objects. The other is to maintain that the position which places the onus on men to control their erotic impulse is *the* true halachic position. The second kind of apologetics is dependent on the Orthodox myth that ideology and philosophy don't affect one's approach to halachah at all. In other words, Rabbi Linzer tries to say here that what the Ultra-Orthodox are doing is not true halachah – his is. But this claim is misguided, because there is no halachic "view from nowhere," a pure halachah apart from worldview.

There is certainly a halachic way to say that tzinus means barricading women in their homes, given the proper poskim. But that's not my halacha (or the halacha of liberal Jews), 'cause it's immoral. 

Poética atochera

I'm reading Leaving the Atocha Station. Believe the hype (if hype is the right word for the appropriate publicity attendant on a well-reviewed novel about an American poet in Spain – admittedly not a bestselling formula). It includes the best description I have ever read of a bad poetry reading, which, although it took place in Spanish, is applicable to bad poetry in any language. (Another lightly handled but weighty motif is the impossibility of making oneself understood in an imperfectly learned foreign language, and how that lack of fluency becomes – for a time – one's own persona. Or maybe the novel is meant to parody that supposed impossibility – it's hard to tell.)

Maybe,  I wondered or tried to wonder, I'm not understanding, maybe these words have a specific weight and valence I cannot appreciate in Spanish, or maybe he is performing subtle variations on a sexist tradition of which I am not in possession. … I forced myself to listen as if the poem were unpredictable and profound, as if that were given somehow, and any failure to be compelled would be exclusively my own. … If [the audience was] in fact moved, convincing themselves they discovered whatever they projected into the hackneyed poem, or better yet, if people felt the pressure to perform absorption in the face of what they knew was an embarrassing placeholder for an art no longer practicable for whateve reasons, a dead medium whose former power could be felt only as a loss — these scenarios did for me involve a pathos the actual  poems did not. … Then I was able to hear the perfect idiocy of [the poet's] writing as a kind of accomplishment.

I don't know what to make of the book's esthetics, that no one nowadays can have a true esthetic experience and everyone is looking for the mere shadow. I know that this esthetic of failure is found underneath several layers of authorial contrivance – it's not the author's esthetic, nor the novel's, but (perhaps) the main character's, inasmuch as a foundation-funded slacker with precious little insight can be said to have an esthetic. It worries me, this esthetic, because I think there are people out there in the world who really do think this way – and these people tend to like John Ashbery, the poet who the main character quotes in the book, and who (in real life) blurbs Leaving the Atocha Station on its back cover. The book also includes an eloquent description of what it is like to read Ashbery:

The best Ashbery poems … describe what it's like to read an Ashbery poem; his poems refer to how their reference evanesces. And when you read about your reading in the time of your reading, mediacy is experienced immediately. It is as thouh the actual Ashbery poem were concealed from  you, written on the other side of a mirrored surface, and you saw only the reflection of your reading. 

(And so on. The paragraph continues, in a way that might – again – be meant as parodic. I'm probably not really cool enough to read this novel.) The description rings true, even to someone (like me) who finds Ashbery infuriatingly coy, like someone waving a picture of a 100-dollar bill in front of you. The question, then, is what kind of poetry Ben Lerner, the author of Atocha Station, actually writes. That's my next assignment.

Lady Job, lost in China?

From disintegrated clay nests, from barred windows and contorted doors, burning leaves of holy books gravitate to the sunset—children with their arms stretched out—as if the sun had given birth to them in the synagogue square and they're fluttering back to their mother. [...]

I'm thrilled to be a part of the newest issue of the translation journal Asymptote! Or rather – a vessel to channel Sutzkever. Check out all the other amazing content, especially the Chinese poetry.

Future pharmaceuticals for a mess of present-day pottage?: intergenerational justice and data exclusivity

I went to a great talk this week at the Berman Institute of Bioethics, and I'll try to summarize it accurately (any felicities are the speaker's, any errors mine). The speaker was Matt DeCamp, a friend of mine who – among other virtues – is enviably trained with a PhD in philosophy together with his MD. The bioethical question is this: how are we to understand the tradeoff between present costs and future benefits in the context of new drug development?

To understand this question, one needs to be acquainted with pharmaceutical R&D. It takes quite a bit of money, about $1 billion, over 10-12 years, to bring a drug to market. Drug companies make the most money of their product in the first 8-10 years after approval, after which time there is either voluntary price reduction on the part of the manufacturer, or a number of generics.

There are incentives provided to these manufacturers to invest in new pharmaceuticals. Familiar to most are patents (or copyrights/trademarks) which grant protection from copying and therefore a monopoly. Less familiar is data exclusivity, under which (according to Federal law) companies are prevented from marketing a product based on the same clinical data for 5 years. This grants a monopoly even if no patent exist.

Data exclusivity, it turns out, brings significant economic value with it for the company. I won't go into detail, but Matt brought the examples of Glucophage and Colcrys.

"Health care reform" (PPACA) proposed a 12-year exclusivity for biologics. Matt then took the case of three people he made up, members of three different but overlapping generations.  How much can we ask of the oldest generation, who pays for this exclusivity without reaping the expected benefits? This is a separate ethical question (and this was one of the central points of the talk) from intergenerational justice with regard to distant generations.

For overlapping generations – e.g., members of generations who are living today, but older/younger than others – the questions are how to balance short-term costs and benefits, and not to lose sight of the fact that, while an individual proposal might be cost-neutral in the medium to long term (e.g. data exclusivity extended to 12 years), its short-term effects might fall disproportionately on certain age groups.

Should the oldest generation be expected to pay in more than it takes out? Matt's argument was no – briefly, that a human right to health would be left unfulfilled if access to certain medicines is part of this right to health, and if costs unfairly fall in disproportionate fashion on certain groups.

Different concerns obtain, however, in thinking about distant generations. (Here he referenced the non-identity problem; briefly, can we expect, or assume, that our actions will have an affect on future individuals? This is relevant, apart from philosophical concerns, because some hold that human rights are not a property of groups, but properly only of individual human beings.)  If we are uncertain what will happen in future generations, or if we cannot accord them the assumption of identity, can we – our current generation – trade away a future generation's right to essential medicines?

Balancing our present needs against future generations' needs requires, Matt said, addressing several thorny questions: the value of a human life; the social discount rate; and the health discount rate. In any case, we need to accept either that future generations do not have rights, and priority should be placed on access now – or that they do have such rights, and we need to work on the tricky balancing act.

Matt closed by mentioning a number of radical policies which might mitigate, but not eliminate, the issue of intergenerational justice. These have to do with eliminating data exclusivity, to "allow immediate generic production, which would lower prices and increase access today, which could force more widespread social dialogue about intergenerational justice." 3 alternatives he mentioned to monopolistic pricing are prize funds, advanced market committments, and public funding of clinical trials. He also mentioned less radical options, and counseled attention to intergenerational justice and the assumptions involved in calculating future risks and benefits.

This is an incomplete summary of his talk, which I hope to see in article form soon (in particular I left out graphs, figures, and health-economics language). He set a high bar for my own talk at the same seminar series, which I am giving next month.

In the beginning was the excerpt

[image error]I have been working a bit on a longish manuscript yoked uncertainly, in a bumpy ride, to the Pentateuch. Amy Newman, the editor of the journal Ancora Imparo, was kind enough to print an excerpt from this (tentatively titled One Nation Taken Out of Another), together with some reflections on bilingual writing. While you're there, check out some great work by Zayne Turner (whose Alluvial Fugue finds error, mishap, and oil in both relationship and metropolis) and the bucolic status updates of Katie Andraski. The whole issue is interesting. Sparks fly.

"Doctor, why is your hospital better than any other?"

This post appeared today at KevinMD.

It happened just this week. For the first time, a patient asked me point-blank, "Doctor, why is Johns Hopkins better than any other hospital?"

I took a deep breath. I had to think carefully. It's not that this was unexpected – Johns Hopkins has been anointed the country's best hospital for 21 years running by US News. But I wanted to tell the patient the truth without alienating them or failing to mention the many admirable aspects of my institution.

One truth, however, cannot be denied: to call one hospital the best is not simple. 

Let's start with the US News recommendations. The magazine does not reveal its methodology, but a paper in the Annals of Internal Medicine, a refereed medical journal, showed that the ratings correlate quite closely to the institutions' reputation, and have little to do with objective criteria. 

There are methods to rank hospitals besides reputation, but they are still limited. Most publicized has been the dispute over the money that hospitals spend on patients near the end of their life. Researchers at Dartmouth have done a lot of work to control these expenditures for other differences of population and comorbidity. Leaving aside the striking geographic variation in end-of-life costs, the question then is whether the hospitals that spend more are doing so for a good reason. Dartmouth, in general,believes not – but there are other researchers who make the case (usually in more limited geographical regions) that more spending sometimes leads to better care on the part of hospitals. 

Then, there are methods to compare hospitals according to various measures necessary to good medical practice ("process measures"). Using the Hospital Compare website, you can compare hospitals on the completeness of their medical therapy for heart failure, or the time it takes a patient – in that hospital – to receive antibiotics for pneumonia in their emergency room (not to mention their rates of infection).

Of course, such measures – like any comparisons – can lead to unintended consequences. Some argue that pneumonia is more likely to be misdiagnosed if it forms part of a core measure, since there is no incentive to avoid giving unneeded antibiotics. This is a larger problem – no comparisons are made for lack of waste – but we won"t go into that here. In general, it is unclear whether public reporting of such data improves effectiveness or safety of healthcare.

A bigger problem, perhaps, for the patient-centeredness that  medicine should aspire to, is the lack of reliable, valid hospital comparison measures that are patient-determined. There is a patient survey which attempts to address patient-centered measures. It's called the HCAHPS, and includes questionsabout doctor-patient communication and whether the patient feels like he or she was listened to in the hospital. (Interestingly, comparing Hopkins to other area hospitals shows no great difference on these measures.) However, the response rate is around 20 to 30% for most questions (it's a mail-in survey), and there are no questions about important aspects of the patient experience, including whether the patient's emotions and opinions about the plan of care were taken into account by their providers.

These measures, albeit imperfect, are based on data, unlike the US News rankings. Nevertheless, many patients do look to reputation to help them choose a hospital. Hospitals (like my own) use such rankings for publicity, which in turn influences public opinion about what makes a good hospital.

What does that mean for my workplace? Johns Hopkins is considered by US News to be the best hospital based on its reputation – which is not undeserved. I have wonderful colleagues. But like many other medical centers, we have a lot of work to do to accomplish the much-vaunted triple aim of better health, better-quality healthcare, and lower cost. Like everyone else, the patients we see are not healthy; our healthcare is not patient-centered; and we waste a lot of money. Luckily enough, we are starting to fix these issues in a real way. I hope soon to be involved in making care at Hopkins patient-centered no matter what department or clinic the patient happens to be in. This is a great time to make sure that Hopkins' ranking justifies its reputation, and show that patients feel that way too, whenever we start to disseminate rankings that patients help determine.

 

Stories of improving communication in the clinic?

To all you quality improvers and advocates out there – doctors, patients, health providers, families – please tell me stories of initiatives that worked to improve communication in the clinic, and how it happened!

Lifting off fictionally

I'm trying the site Fictionaut and encourage you to read a story I just posted there. Here's a teaser.

That was the first time I went over the wall. No bird opened its mouth to chirp. No wind blew. I staggered a little on the stony edge.

And dropped down. I changed in a cafe. Shaved. Emerged as that rare thing: a new man. My clothes were old, saved for years in my basement, but my thoughts and person were new.

Knightly news

My grandfather ran a bar and played chess. A poem on those topics appeared recently in the second issue of the Cobalt Review. Enjoy!