The problem with consumers


This post was considerably delayed, first due to the urgent need to publicize “Struck by Orca” and then by successive authorial waves of random health events (specifically J00[1], 2 separate bouts of A09.9[2], and in the middle, a nasty encounter with W00[3]). Now I am more or less healthy and ready to post about consumers.

On November 13, I concluded my post about patients by saying:
“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.”

Consumer, as an alternative to patient, has been around for quite a long time. Its origins are fundamentally economic; a consumer is a person engaged in a transaction who is not a producer. The Oxford English Dictionary entry shows you how old this usage is:

“consumer, n.” [OED Online. September 2013. Oxford University Press. 14 October 2013.]
2. A person who uses up a commodity; a purchaser of goods or services, a customer. Freq. opposed to producer.

1692 J. Locke Some Considerations Lowering Interest 20 Money may be considered as in the hands of the Consumer, under which Name I here reckon the Merchant who buys the Commodity, when made, to export.
1725 D. Defoe Compl. Eng. Tradesman I. Introd. 5 By the retailer to the last consumer.
1757 J. Harris Ess. Money & Coins 37 All men are in some degree consumers of foreign commodities.
1860 R. W. Emerson Wealth in Conduct of Life (U.K. ed.) 75 Every man is a consumer, and ought to be a producer.
1897 Sears, Roebuck Catal. No. 104. 1 (heading) Consumers guide.
1923 H. Kyrk Theory of Consumption v. 112 Consumers are influenced by other forces than those set in motion by the merchants who have goods to sell.
1933 Planning 1 vii. 5 Retail outlets..where improvements can be tried out and consumer reactions tested.
1970 Which? June 163/1 Manufacturers and consumers do not have identical points of view.
2001 Amer. Jrnl. Philol. 122 270 One continues to wish that the Clarendon Press would put its clothbound books a bit more within the reach of the individual consumer.

So much for economics. How long has consumer been applied to a client of healthcare services? The health context is the tricky part. There are just too many ways to express it. Some historians attribute the term to the late 1930s, when the ancestor of today’s Kaiser Permanente network was formed by workers for the Kaiser shipyards in California. (For a pocket history of Kaiser, see here).
This was the first HMO (health maintenance organization) and the term consumer was used precisely because the organization enabled purchase of healthcare services prior to need, that is, prior to being a patient.

Thus from the beginning, consumers and patients were not synonymous. In fact, consumer had to be coined precisely because patient implied “a person in a relationship with a healthcare provider or system for the purpose of receiving care” and thus was not the appropriate word.

The phrase consumer health is easier to trace. Every so often I search digitized newspaper content for it. This can never be the whole story, because different commercial vendors provide access to different newspapers and different years. Newspaper Archive currently has the largest suite of possible newspapers, however. The oldest reference I find to consumer health comes from the Middletown (NY) Times Herald of September 12, 1937—contemporaneous with Kaiser. It was used in a story about promoting the dairy industry:

“Each particular phase of the program aims to high-light the various steps in milk production and handling, the sanitary precautions taken, and the benefit in consumer health resulting from increasing the milk content of the ordinary diet.”

Then there’s Google NGrams, which covers books that Google knows about, 1800 through 2000. The phrase Consumer health is comparatively modern (1933) next to the term consumer, which appears — context unknown — as early as 1800.

A number of studies have been published that investigate how patients feel about being called consumers or anything else. These are mostly British and mostly studies of pregnant women. (A finding that I believe is worth a small study of its own). And the results are:

100 UK pregnant women, 15-50 years old: “Mother-to-be” and “Pregnant women” preferred. Batra N, Lilford RJ. Not clients, not consumers and definitely not maternants.Eur J Obstet Gynecol Reprod Biol. 1996 Feb;64(2):197-9. PubMed PMID: 8820002.

446 Cornish mothers, median age 28. Most popular: “Patient”. Least popular: “Client”, “consumer”, and “customer.” Byrne DL, Asmussen T, Freeman JM. Descriptive terms for women attending antenatal clinics: mother knows best? BJOG. 2000 Oct;107(10):1233-6. PubMed PMID:11028573.

200 UK mothers, age not provided in abstract. Most popular: “Patient”. “Least popular: “Client”, “consumer”, “customer.” Baskett TF. What women want: don’t call us clients,and we prefer female doctors. J Obstet Gynaecol Can. 2002 Jul;24(7):572-4. PubMed PMID: 12196849.

Review of 80 published studies of mental health services published in the English language; no actual humans involved (except in the research and writing, presumably). Preferred terms in published studies: “Client”, “patient”. Dickens G, Picchioni M. A systematic review of the terms used to refer to people who use mental health services: user perspectives. Int J Soc Psychiatry. 2012 Mar;58(2):115-22. doi: 10.1177/0020764010392066. Epub 2011 Feb 21. Review. PubMed PMID: 21339236.

As a word, consumer is demonstrably problematic. For example, the animation at the top of this post features a Sneezing Person. I am not a healthcare professional, nor do I play one on TV, but I feel safe in stating that this gentleman has a cold, an allergy, or a photic sneeze reflex. Is he a patient? No. From the photographic evidence, we know nothing about his access to healthcare. We know more about his access to movies. For all we know, he subscribes to a religion that prohibits him from visiting a healthcare professional. So what the heck IS he? We have to call him something. Is consumer accurate if he is not buying anything? (Besides a movie ticket?) Consumer, as inadequate a term as it may be, may be all we have.

Personally and professionally, I believe that consumers are not necessarily patients and should not be equated with patients, particularly in the healthcare information-seeking and informatics worlds. Conflating consumer with patient obscures some important differences. A high-school student doing research on cancer for a term paper is a consumer; his grandmother undergoing chemotherapy is a patient; both individuals will be in need of accurate, authoritative, health information, but how that information is provided to them really ought to differ. Because virtually all consumers are future patients, or will be caring for/living with/supporting patients, enabling consumers to access health information is critically important. Let’s just call them what they want to be called: Sneezing People.

[1] “Acute nasopharyngitis.”
[2] “Gastroenteritis and colitis of infectious and unspecified origin”
[3] “Fall on same level involving ice and snow.”

Photo credit: “A series of animated GIFs excerpted by Okkult Motion Pictures from Coughs and Sneezes, a curious and amusing propaganda film from post war era on the dangers presented by… sneezing!” From the marvelous Public Domain Review.

Doctor, is it hot flashes, or am I going through menopause?

Hot FlashesAmy Dickinson, my favorite advice columnist since the death of Abby, Ann and Ask Beth, had an interesting exchange with a reader on October 15. The reader took issue with Amy’s previous advice issued on September 30. To quote:

“Dear Amy … I assure you it is not appropriate to tell your students that you are “menopausal”. This sort of thing should never be disclosed in the classroom. –Also a Teacher.”

Amy’s response raised my eyebrows:

“Dear Teacher: I didn’t suggest “The Teach” should say she was “menopausal” – only that she was having a “hot flash”.”

Here’s what Amy actually wrote on September 30: “Let’s say you have a sudden hot flash in fifth-period calculus. You can say, “Sorry, class, I’m having a hot flash. Let me fan myself and take a drink of water and it should go away in a minute. Whew! Any students who are sufficiently fascinated can very easily do an Internet search to discover what’s going on and the reason behind it. Soon enough this will become just another aspect of the natural and quirky progression of your day.”

Amy has pointed out a great truth of the age, which is that people can avoid giving out Too Much Information (TMI) by using a short casual throwaway reference that listeners can explore in more depth at their leisure on the World Wide Web. If the listeners are high school students, they are likely to do this exploring long before they get home. In fact, if the listeners are anything like my graduate students, they are exploring the minute the teacher has finished her sentence.

There are at least three things that fascinate me about Amy’s exchanges. All naturally involve medical terminology and consumer health vocabulary.

(1) What high school student does not know that “hot flash” is absolutely synonymous with “menopause?” Under what rock has that student been living?
(2) How long has “hot flash” been a synonym for “menopause?”
(3) Why should saying “hot flash” be any better than saying “menopause” to a class full of high school students?

Answering question #1 would require copious amounts of federal funding, which seems unlikely at the present point in history. So I’m ignoring that one. Questions #2 and #3 are more answerable. Here are the answers.

How long … “Hot flash” is revealed by the Oxford English Dictionary to date from 1610. Sort of. It is first recorded in a play by John Fletcher (as in “Knight of the Burning Pestle”). This play title is just as much of a double entendre as it sounds; this play turned me on to the delights of consumer health vocabulary long before I thought to formally research it).

But the “hot flash” described by Fletcher does not resemble menopause much: “Farre from me are these Hot flashes bred from wanton heat and ease, I haue forgot what loue and louing meant.” Wanton heat and ease sounds like the opposite of menopause. The next entry in the OED isn’t much better: “They continued wandring too and fro for the space of two days, hearing loud Shrieks and Groans, and now and then felt hot Flashes, which so amazed them, that they wished they had never ventured in.” [Fortunatus, 1682]. Fortunatus got the shrieks and groans right, but “amazed?” I don’t think so. In fact, the first reference I find to a menopausal hot flash, or at least a female hot flash, dates from 1907, when the Perry (Iowa) Chief reported that “Such warning symptoms flashes, headaches..and dizziness are promptly heeded by intelligent women who are approaching this period of life.” Now we’re talking.

Hot flash vs. menopause: Amy Dickinson’s advice reminds me of one argument about consumer health vocabulary and why we need it. This argument proposes that people are more comfortable with informal speech when it comes to descriptions of sexually themed and/or potentially stigmatizing body parts or bodily activities. This phenomenon has actually been studied by medical researchers.

I published a whole paper about consumers use of very informal terms — obscenities — for health concepts, back in 2007. If you are 18 or older, you can read it here: “Nursery, gutter, or anatomy class”. This paper got standing room only attendance at the American Medical Informatics Association where it was presented. Some members of the audience came up to me afterwards and told me great anecdotes about obscenities they’d encountered in their clinical and/or IT practice, none of which are printable. This paper has been cited in places as diverse as a medical informatics textbook..

And a blog by an artist and arts educator. Two more different communities of readers you could not expect to find.

… which tells me I am on to something. But what? More research is needed. Maybe I should Ask Amy.

Readers of Elfshot can see the original letter, and response from Amy Dickinson, on Amy’s blog here. This is where I got the graphic, too. Her response is on the Chicago Tribune page here.

Oxford English Dictionary citation: “hot flash, n.”. OED Online. September 2013. Oxford University Press. 17 October 2013 .

Bad habits and political excitement

Thanks to an archivist colleague, Vicki Tobias, at the University of Wisconsin-Madison for sharing this: Reasons for Admission It cites the Trans-Allegheny Lunatic Asylum without further details. However, I can attest to the truthfulness of these Reasons for Admission based on the research I’ve done into historic medical records and U.S. census mortality data.

These old-fashioned expressions have multiple functions in historic medical documentation. As you can see in the Trans-Allegheny graphic, some Reasons for Admission are clinical labels (“Asthma”, “Brain Fever”, “Female Disease”) while others are mini- medical histories (“Shooting of Daughter”, “Decoyed Into the Army”) and a subset of the second category attempts to assign blame (“Snuff Eating for 2 Years”, “Parents were Cousins”). Given space, humans tend to tell stories; I found similar repurposing of medical “forms” in my PatientsLikeMe study.

I am fascinated by historic medical expressions like these because they represent pure thought completely untrammeled by formal medical terminological systems. This is not pure *physician* thought, either: like the mortality data I’ve collected from US Census records, these expressions are sometimes the product of a dialogue between physician and family member, with the physician turning into a transcriptionist to capture the information (just as they do today). We can even picture the conversation: “What brought your wife here, Mr Smith?” “She’s been grieving ever since the death of her sons in the war.” Or alternately: “Novel reading. It’s that dadblamed novel reading. I blame it on the public library.”

There *were* no formal medical terminological systems that were shared across institutions prior to 1958. While individual hospitals have for centuries developed their own internal problem lists and taught them to trainee physicians, these were not formally *shared* lists, and once Newbie Physician left the hospital where he interned, he was likely to have to learn a new list. This process works fine until Hospital A has to share data with Hospital B; at that point, they need to agree on what diseases are — a struggle we continue to live with in the 21st century.

My personal favorite historic term? From the US census: “Ran away with the cars.” That turned out to be a man who died in a railroad accident (“the cars” means “railroad” at a certain point in human history).

Auto-brewery syndrome: Name it and claim it

Snippet via Google News tells me about a new diagnosis, ‘Auto-brewery Syndrome’ in which a man intoxicated himself without drinking any alcohol. This is an interesting story to me, a non-alcohol-drinking person, for several reasons. 1. The authors implicate medical terminology, thus making themselves subject to comment on my blog, by stating that this syndrome is “difficult to research since it goes by several other names.” Well, yes, but for heaven’s sake, that’s no excuse. Most things in medicine have dozens of other names. This is why we needed a Unified Medical Language System. 2. This article appeared in an open access and fancy-sounding journal from “Scientific Research Publishing” which itself appears on Jeffrey Bealls’ important Predatory Publishers list. SRP certainly looks problematic to me. They claim to be indexed in several “world-class” databases, including Web of Knowledge and PubMed, but the WOK “indexing” is in fact citations appearing in other journals — the journal itself is not indexed — and PubMed reports exactly one record from this journal which is an author submission to PubMed Central. PubMed Central would accept author submissions from an 8th grade Zumba class if the Zumba teacher had federal funding. Not the same as indexing, folks! 3. The additional names are kinda fun, I have to admit. “Auto-brewery syndrome” is also called “Drunkenness Disease” and “Endogenous Ethanol Fermentation.” But the authors’ frank admission that “Most of the articles published on this syndrome are anecdotal” makes me distrust their work. I like my articles to have actual data in them. Panola Community College needs to support its faculty better, or, conversely, give them more to do.