King Charles, Struck by Orca, and the ICD

King_Charles_II_(Lely) Many, many thanks to FB friend Caroline Meikle, an alert SLIS grad and veteran of my Health Information Systems class, for sharing the news about Struck by Orca with me. It’s a volume of artworks illustrating the International Classification of Diseases, v. 10 – ICD-10 for short. How can a classification system have illustrations, you ask? Read on.

You have all encountered the ICD system if you live in a country that is part of the World Health Organization, or WHO, and have gone anywhere near a health-related process which needed to be counted by someone – whether or not the service cost you any money. Because the ICD is a product of the World Health Organization, it is not a commercial product and requires no licensing. For this reason, health information systems vendors used to brag that they built it into your system for free. To this, informed medical informatics professionals responded: “Big whoop.”

On your doctor or hospital bill in the US, if you are unfortunate enough to be admitted to the hospital with the plague, your ICD-10 code probably looks like this:

A20.9 Plague unspecified

“Unspecified”, which was “NOS” in ICD-9, is an all-purpose means of denoting “a concept for which a code does not yet exist.” In the example given above, this code would be used for a case of plague that was recognized as a more specific type –the specific types recognized by the system have codes:

A20.0 Bubonic plague
A20.2 Pneumonic plague

All classification systems must have a “park it here for now until we have something better” space. Why? Because knowledge is constantly evolving faster than shared language can express. However, these spaces must be raided regularly to develop new codes, or else the classification system will become encased in concrete and will be unusable. Hence the paradox of controlled vocabularies: Always a bit behind reality; constantly under revision.

For some years, my informal method of assessing classification codes in health information systems was to do a search for Astrocytoma. This is a specific type of brain neoplasm (=cancer). Until ICD version 10, the closest available term for this diagnosis was Miscellaneous Brain Neoplasm: NOS. Not very helpful if you are looking for astrocytomas! The cheaper systems vendors didn’t bother to build in other vocabularies, and stopped at ICD-9, because it was free; so the absence of an astrocytoma code was a negative sign for the health of the information system.

WHO nations use the ICD to produce disease statistics. This has been going on for centuries [See here for a good pocket history; initially, because the country’s leaders needed to be informed about the health (or not) of the nation. (The origin of “statistics”, of course, is “the state.”) John Graunt, an English haberdasher (1620-1674) is important to epidemiology and public health because he is the father of the mortality table: he tried to create a system showing deaths from the Bubonic Plague. For this work, King Charles II made him a member of the Royal Society, although according to Wikipedia this did not prevent him from dying in poverty because he chose to convert to Catholicism at the wrong historical moment. You can see excerpts from John Graunt’s work here; it must be an authoritative source because the site maintainer labels it “the official John Graunt Site of the 1996 Olympic Games.”

Later on, nations began to compare themselves to each other by using statistics. This effort was systematized by French statistician Jacques Bertillon (whose younger brother Alphonse invented the criminological use of fingerprints – what interesting conversations they must have had over dinner). Over time, through and despite world wars, these statistics assumed standard formats and grew into the ICD we know today and its family of context-aware modifications — such as the ICD-CM, used for billing in places like physician’s offices, which knows about diagnoses as well as causes of death. ICD-10 was finished in 1992. It is considerably more complex in the ~25 WHO countries that use it for reimbursement purposes; 110 WHO countries use it for purely statistical purposes. For this reason, the United States of America has been moving at an absolutely glacial pace (ICD-10 launched here in October 2013) while in parts of Europe ICD 11 is in beta.

Because the causes of human disaster are infinitely varied, there are some really, really odd codes. Among them:

• R46.1. Bizarre personal appearance
• Z62.891. Sibling rivalry
• X52. Prolonged stay in weightless environment
• V96.00XS. Unspecified balloon accident injuring occupant, sequela

And my personal favorite:

Y92.253. Opera house as the place of occurrence of the external cause

According to the publisher’s website, Struck By Orca is a book of “more than 60 pages, illustrating dozens of artists’ visual interpretations of their favorite ICD-10 codes. Artists include healthcare professionals, entrepreneurs, and professional artists.” I always like it when the artists include artists—this gives me a feeling of confidence. But it is much more important that the artists include healthcare professionals, who really understand the subject matter almost as well as their patients do. Look at the unhealthy art yourself at:

http://icd10illustrated.com/

Portrait credit: Peter Lely [Public domain], via Wikimedia Commons.

The problem with patients

1234929_10153173963320487_1299285971_nA recent guest column in my favorite medical blog, KevinMD, was written by patient advocate and former medical reporter Pat Mastors. She blogs here. Her column, “We need a new word for patient”, is all about the terminology – specifically, terminology used to refer to people partnering with healthcare professionals to discuss their health problems. You can find the KevinMD column here.

People partnering with healthcare professionals. Hmmm. I could call them PPHP, for short, but this is far too close to the acronym for my personal favorite example of medical terminology – pseudopseudohypoparathyroidism – also called PPHP for short. That’s almost as confusing as the name of the disease. So I’ll just call people partnering with healthcare professionals to discuss their health problems patients for the moment. Which would not be cool with Pat Mastors.

What’s wrong with patient? A recent editorial by the marvelously named Dr. Hem, in a Norwegian medical journal, sums up the usual criticism this way [English language version on site]: “Others have pointed out that the concept of patient is historically charged. Previously, the treatment of patients was characterised by paternalism – an omniscient, imperious doctor and a passive, obedient patient; the archetype of a power disequilibrium.”

Pat Mastors similarly argues: “Why is “patient” not le mot juste? Because it means “one that is acted upon” (Merriam-Webster), and its origin means “one who suffers” (I don’t know about you, but my friends would not describe me that way.)” And the Norwegian Dr. Hem goes on in the same vein: “The current ideal is the knowledgeable and active expert patient who imposes requirements on his/her doctor … It can be claimed that the new patient role is so different from the old one that the concept of patient should be done away with altogether …”

Sociolinguistics 101: Language has power. We have seen a similar evolution in discussing what patients do. In the “old” model referenced by Dr Hem, patients always did what their doctors told them. If they did not, they were “bad patients”. “Bad” is a little crude, though, so they were described as noncompliant. Over time, an attempt was made to move towards a participatory model of care, and terminology moved along with it. Adherence, as in “adherence to treatment”, became the favored word. At least, in theory. Has that solved the terminology problem? Not according to JM Bissonnette, who in 2008 published a concept analysis of the terms adherence, nonadherence, and treatment refusal as found in the literature of medicine, nursing and allied health. In 114 papers, “no distinct differentiation” was found between adherence and compliance. The synonymy is apparently complete. But Bissonnette still takes the field(s) to task for adopting a healthcare-professional-centric view: “No definition of adherence exists that reflects a patient-centred approach, the dynamic nature of adherence behaviour and the power imbalance implied by these terms.”

Physicians – and nurses – are damned if they do and damned if they don’t, by Bissonnette’s logic. In my humble opinion, this is because there will always be a power imbalance in situations where one party to a conversation knows something the other one doesn’t. As a person who did not drive an automobile until the age of 35, I am mildly clueless about cars, and if Jiffy Lube Guy suggests that my car has a cracked veeblefetzer and requires major surgery, I am very likely to believe him. That’s a power imbalance. It does not mean I feel particularly inferior to Jiffy Lube Guy in a cosmic sense. But he’s totally in control of that conversation. That’s fine. That’s why I brought him my car in the first place.

It may not be obvious that power imbalance in healthcare communication cuts both ways. As readers of this blog know, I am fascinated by symptom expressions – verbal or text-based, as in my PatientsLikeMe paper.

Why? Because this is the part of the healthcare conversation in which the patient is in complete control. No care can actually take place until the patient has revealed why they are seeking treatment. In fact, in my exhaustive review of 19th-century medical records, I found the physician catchphrase “What brings you here today?” expressed in documents as old as 1888. It’s the healthcare conversation starter because without a response to that question, the physician is completely stymied. Not only is this catchphrase a conversation starter, but it’s a very long-lived piece of the medical record – paper and electronic – and, after a brief incarnation as “presenting complaint”, lives on today as ‘History of Present Illness’.

So if patient is historically and socioculturally loaded, what else can we call them? Pat Mastors lists some alternatives: consumer, partner, person. Dr Hem, in Norway, overlaps in saying user,consumer, customer. More on these alternatives in my next post. In the meantime, be patient.

References cited

Bissonnette JM. Adherence: a concept analysis. J Adv Nurs. 2008 Sep;63(6):634-43. doi: 10.1111/j.1365-2648.2008.04745.x. Review. PubMed PMID: 18808585

Hem E. Patient, client, user or customer? Tidsskr Nor Laegeforen. 2013 Apr 23;133(8):821. doi: 10.4045/tidsskr.13.0527. English, Norwegian. PubMed PMID:23612085.

Smith CA, Wicks PJ. PatientsLikeMe: Consumer health vocabulary as a folksonomy. AMIA Annu Symp Proc. 2008 Nov 6:682-6. PubMed PMID: 18999004; PubMed Central PMCID: PMC2656083

Dynamite and word-coining

Little Willie 1911 Trawling the Web a while ago, I ran into a website full of Little Willie jokes. These are a venerable form of sick humor dating back to at least 1904; they made a brief comeback in the 1960s all over the world. You can find way too many of them at the wonderful website Ruthless Rhymes. Warning: This site is hazardous to the preconceptions of those who think the late 19th and early 20th centuries were a More Innocent Time.

Today’s post features an interesting medical Little Willie from 1906 demonstrating the principle of eponymy. Eponyms are terms derived from names of people or places, and they are quite common in medicine, which, as a science, likes to commemorate discoverers of things. One of my favorite research topics is Dr. John Benjamin Murphy (1857-1916), a famously controversial Chicago surgeon. He was a native of Appleton, Wisconsin, practiced for a long time in Chicago, was much more popular in Europe than he was at home, but is buried in Calvary Cemetery in Evanston, IL, a beautiful showplace of monuments that my husband and I visited often when we lived in a hovel around the corner from 1991 to 1992.[1]

Murphy has been commemorated by the American College of Surgeons with a splendiferous auditorium. On Halloween 2013, I’ll be giving a paper about my Biographical Subjects in that very auditorium, which is weirdly cool because Murphy may very well have been an influence on my Biographical Subjects’ careers. At the very least, Murphy took out their nephew’s appendix in the late 1890s.

Among other things, Murphy was an early champion of the appendectomy. Enroute, he lent his name to clinical signs as well as surgical devices:

Murphy’s sign
Murphy drip
Murphy’s button
Murphy’s punch
Murphy’s test

and shared the credit for:

Murphy-Lane bone skid

[From http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1183442/.]

Spot the eponym in the following Little Willie:

Willie fetched his grandpa, kind,
(Chloroform he couldn’t find)
Blew him up with dynamite–
Willie was an Oslerite.

[from the Princeton Tiger; Published in the Los Angeles Herald, March 11, 1906 under the article title “Vicious College Humor”]

The eponym “Oslerite” is used to convey the idea that Willie follows the philosophy of Dr. Osler. This works much better if you know who Dr. Osler was. This explanation appears at Ruthless Rhymes:

“Professor William Osler (1849 – 1919) is well known in the field of gerontology for the speech he gave when leaving Hopkins to become the Regius Professor of Medicine at Oxford. His speech “The Fixed Period”, given on 22 February 1905, included some controversial words about old age. Osler, who had a well-developed humorous side to his character, was in his mid-fifties when he gave the speech and in it he mentioned Anthony Trollope’s The Fixed Period (1882), which envisaged a College where men retired at 67 and after a contemplative period of a year were ‘peacefully extinguished’ by chloroform. He claimed that, “the effective, moving, vitalizing work of the world is done between the ages of twenty-five and forty” and it was downhill from then on. Osler’s speech was covered by the popular press which headlined their reports with “Osler recommends chloroform at sixty”.’

All of which goes to show that the problem of media miscommunication and attention-getting headlines is a lot older than we 21st-century netizens tend to remember.

*******

[1] Sort of kidding about the hovel.

What a difference a name makes

Why does consumer language matter to health information retrieval and, more broadly, to health *care*? Zach Ryan, quoted in today’s USA Today, illustrates why. “”I can find the most obscure stuff on Google,” Ryan said. “I mean stupid, obscure stuff. But I couldn’t find how to get health care through the government. When you type in Obamacare, you would think it would come right up and have some clear instructions.” [USA Today]

The term “Obamacare” originated as a slur. It is certainly still used as a slur by opponents of the Patient Protection & Affordable Care Act (PPACA). However, it has also been embraced by PPACA proponents. But sentiment analysis aside — Obamacare is not actually what the legislation is CALLED. The smartest search engine in the world can do nothing for searchers who can’t do the mental mapping for themselves.

P.S. For Edward Schumacher-Matos’ take on Obamacare — the name– — see “What We Hear When NPR Refers to ‘Obamacare‘.