A patient by any other name

Recently two communities have been discussing a pretty basic question. What should we call the artist formerly known as “patient”?

The two communities are the e-patient community and the “patients” in the patient safety movement, specifically those that met at the last IHI meeting.

But why would we want to call patients anything other than “patients”?
The word patient has some negative connotations. Indeed, the Websters dictionary entry has exactly two definitions of the word patient as a noun.

1 a : an individual awaiting or under medical care and treatment
b : the recipient of any of various personal services
2 : one that is acted upon

It does indeed seem that a historical definition of the word directly implies passiveness. The second definition is particularly problematic, but even the notion that a patient is one that “waits” for care in the first definition is contrary to the participatory and proactive ideals of both of these groups.

But we should not pretend. “Patients” are in fact very often passive.
If we define the leaders of these communities as “fully engaged patients” then what is typical in “patients” is not merely “not fully engaged” but “not at all engaged”.  Paternalism in medicine is not just a problem in the attitudes of doctors, but for many “patients” as well. In fact the word “patient”, with its passive context,  is probably the right meaning for most people.

So both of these communities have been talking about two problems here at once, and conflating them frequently.

First we have a problem that patients are frequently passive and even when they are engaged they are not effective because they are not typically well-equipped. This problem can be summarized as “Lack of patient engagement”.

But then we also have the problem of how to describe a person who is successfully taking a proactive, engaged and effective role in their own healthcare.

I think it is a mistake to conflate these problems. If we are going to be asking doctors to change their behaviors and/or perspectives we need to be clear whether we are asking them to change the way they relate to a typical patient, even when that patient may be entirely passive, or whether we are asking doctors to recognize that “patients” in our communities are moving beyond the passive role and expect to be treated differently. When we discuss whether we should keep the old name, “patients” or create a new name, we need to be clear if we are talking about something new for everyone, or just those that embrace a new ethos and responsibility. Are we debating a name for “everyone” or a name for “us”?

Given that distinction, we can more clearly discuss the various terms that we are suggesting. Here are some of the alternative words that have come up in our groups:

The term consumers emphasizes that as “patients” we are having an economic transaction. All patients, both passive and proactive are obviously consumers. The notion here is that by referring to market forces and discussing things in business terms, that we might bring competition into play. The fundamental problem with this notion of bringing a market to bear in healthcare is that fair markets only exist when there is information parity. Consumer reports, for instance, serves to provide information parity in the automobile market, as does Kelly Blue Book. Both the relative performance, and the current average price of any automobile are generally known both the buyer and seller of automobiles. But when we talk about patients as consumers, they have dramatically reduced information regarding both the price and the quality of the services that a doctor provides. Do not get me wrong, I think these problems are solvable and as a result the “consumerism” movement within healthcare has value, but it would be silly to simply pretend that by calling a patient a consumer we can ensure that they are actually playing this role in economic terms. So the notion that patients -are- consumers is pretty weak, but the notion that they -should be- consumers is a great idea. The consumers union has important healthcare efforts that should be supported and embraced.

The second term is client. The benefit of this term is that it emphasizes that the person under care is providing payment for care and should be treated with respect as a result. The term client has very different meanings in different professional relationships. We certainly would not equate the relationships  lawyers, prostitutes, hair dressers and mental professional with their “clients”. The word is quite flexible. This can be both a strength and a weakness. Moreover, it is often not strictly true. At least one definition of client is “someone who pays for goods or services” and often the “patient” is not actually the one paying for care. Sometimes parents or children pay, sometimes society or the government pays and at least usually, a third party is actually “payed” by the patient for care, and that third party then pays the clinician. One could argue that many of the woes in our healthcare system are the result from treating insurance companies as the clients to the detriment of both the patients and the doctors.

The term patient 2.0, like health 2.0 refers to the iterative improvement that we have seen in technology. Health 2.0 itself was a controversial term when it was created, both described as being both the application of web 2.0 technologies to healthcare (the Holt definition) and the fundamental rethinking of healthcare itself (the Shreeve definition). Since those debates, both definitions have held up well. If we accept a “Shreeve” style definition of Patient 2.0, then we label our efforts as a natural successor and a fundamental improvement at the same time. Unfortunately many will hear a “Holt” style definition and assume that Patient 2.0 means patients who like to use software, which misses the point entirely.

This problem is shared with the term e-patient. To the initiated the “e” in e-patient stands for “empowered” or perhaps several “e” words like “empowered”/”engaged”/”enabled”/”educated”. But reporters and other bloggers constantly refer to the parallel of “e-mail”, assuming that the “e” means “electronic”. Again the notion that an e-patient is a patient who e-mails misses the point entirely. However, e-patient does have very strong brand, mostly due to its very popular blog and the wonderful white-paper. It is one of the most recognized terms in our larger movement. Empatient has been suggested as a dis-ambiguous improvement on e-patient, one that is not subject to confusion. It also is a play on words with impatient, (which I find delightful, because I am a word-geek).

Patient expert has been suggested as an acknowledgment that patient’s can often be very informed about their disease and conditions. But this term is also controversial; if a patient truly had the required health expertise, then there would often be no need for a doctor. Doctors, as experts, might resent this term, because it makes an implication that is clearly false… that both the doctor and the patients are experts in healthcare. Of course one could argue that the right term should be expert patient. Rather than suggesting that a patient “has healthcare expertise” which might be insulting, this arrangement implies that a person has become an expert, at being a patient. Hopefully this would not be as insulting to doctors and probably be a more accurate description. Of course the problem here is that people might be told “expert patient” and presume that it means “patient expert”.In this same vein a notion of a licensed patient, has been proposed, but it unclear what specifically licensed might mean.

Patient advocate is a term that is well-suited towards those with deep experience being patients, who are engaged with helping others who are being overwhelmed by just becoming patients. This has some overlap with the ‘advocate’ relationship that a lawyer might have.  Patient activist is a good term for those who attempt to speak for larger groups of patients at once.  The problem with these terms is that it very accurately describes certain individuals in our communities, but fails to capture the ethos that we would hope to instill in everyone who receives healthcare.

In the quantified self movement, which overlaps with the n=1 movement, they often refer to themselves as #quants. This movement is focused on collecting data on oneself in order to achieve a deeper understanding of ones own health and wellness.

A clear trend with these terms is that they often represent terms that are 100% appropriate for a specific subset of our overall movement. We need to have people who specifically attempt to be engaged and proactive patients using software, and patients 2.0 is a great term for that. When we are trying to get healthcare to respond to consumer forces, calling patients consumers is appropriate. Sometimes the “e” in e-patient might really refer to a person who want to be fully engaged… by e-mailing his or her doctor. In a shameless plug I argue that the term cautious patient, coined by Dr. Oliver and the subject of my work at the Cautious Patient Foundation is the right term to use when you are discussing patients who are A. fully engaged  B. educated about patient safety and therefore C. able to take steps, as patients, to avoid medical errors.

But all of these alternatives should be compared with efforts to rehabilitate the original term “patient”.

Over time, the meanings of words in any language changes. Perhaps it is simply time to redefine this word. In many cases, this work has already begun. One of my personal favorites is e-patient dave’s catchphrase “Patient is not a third person word” (not sure if he coined this, or merely popularized it… either way, when I say it, I am quoting Dave.)

Perhaps we just need to re-embody the word patient with a new meaning, one that is more compatible with our movement. One way to do that might be to temporarily use a term like true patient, pure patient or real patient ( perhaps a way to take advantage of the fact that this can be an adverb/adjective as well?)

I want to be clear that I have no specific preferences on what term(s) are most appropriate.  I would not have added something to this post if I thought it was ridiculous, and I am trying to summarize and evaluate positions that I have heard others take on these issues. If I have missed something or been to critical to an idea that you favor, leave me a comment and I will update this post if you are convincing.

Regards,

-FT

Update 12/21/2010:

e-patient dave had the following to say in response:

Hey Fred – when I was in college in the Nixon years, my more radical friends often debated the power of language especially during a revolution. I’m no radical compared to them, nor to some of the more intense people I know in the patient movement, but I agree there’s something to it. Revolutions (race, gender, whatever) involve unshackling, and a lot of shackling lives in language.

I’ve always thought there are two changes in a social revolution: the underlying reality and the language we use to discuss life. There’s a period of intense discomfort during which the reality is shifting and the language no longer fits – just like a bad shoe. People start to see themselves (and others) in the new reality, and they say “That old language isn’t me, no sir!” Others say “It *is* me – I’m the NEW [whatever].” Some take over the old words, even the pejoratives, and take ownership in the new world, as some blacks have done with “nigger.” They assert that that signifies real power – “The Man no longer gets to say. We get to say. The language of your dominance no longer applies.”

I don’t mean to sound like an expert on this because I was no expert, just an observer. My point here is that we in the movement ought to be thinking about where we sit, collectively, on the timeline of transition. Many of us are awakening to our power, just as blacks and women did during their revolutions. Perhaps we should track both issues independently: the reality, and what we call – AND what others hear when they hear our words. Because a social revolution’s not complete until the old meaning’s obsolete.

The only point I would disagree with about this is the notion that Dave is “just an observer” on this issue. Some of the things I have heard him say, esp the ‘third person’ thing, have clearly raised my own awareness about how I discuss patients.