What do we (patients) call ourselves? This is a deep subject that’s been debated a lot. (If I were Susannah Fox I’d toss in a dozen worthy links here:), but I’m short on time. Please add some in comments.)
There is indeed power in the words we use, because the people who hear them attach meaning to them, and as change unfolds, it’s important to distinguish between our words, the reality they represent, and all the different meanings different people intend and hear. SPM* member Fred Trotter has a weighty post this week, A Patient By Any Other Name. Here’s a comment I added.
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 it – AND what others hear when they hear our words. Because a social revolution’s not complete until the old meaning’s obsolete.
*For newcomers, SPM = Society for Participatory Medicine. This is the blog of the SPM; its journal is JoPM.
I’ll leave the same comment here that I left on Fred’s blog:
Patient and Consumer are just different roles played by the same person. I’m a person, or in the collective, people. The benefit of these terms is that we don’t need a reminder that we are all people the same way that we do when the terms consumer and patient are used.
You asked for links so here’s a link to a post I wrote for kevinmd called “I’m a patient, not a consumer.” It generated 80 comments and some interesting and at times heated discussion.
KevinMD is one of those doctor-blogs where you could assert ANYTHING and there might be heated discussion. :–) But that was a good thread.
Do you have any thoughts on what I said – the transitional mismatch of words & reality during a social earthquake?
I might be the wrong person to ask about the mismatch of words/reality during a social earthquake. We know words have power. In general, I would say yes, there can be a mismatch while the language catches up with the reality. The best example I can come up with other than the ones you brought up already is the feminist movement and use of the word “girl.” But I always come back to individual intent. If someone isn’t using the word as a weapon I try to take it in the spirit that was intended.
That might be why this whole movement/earthquake thing makes me nervous. The tenor I’m getting from some of the discussion is that “patient” is a four-letter word. I just don’t want to see this harden into ideology and labels. I’m not sure I want to be part of a movement. I’m not comfortable calling myself an e-patient or an empowered patient or an informed patient, even though I am assertive and believe it’s as necessary to the medical experience as it is to the work experience or the marriage experience. I had to grow a spine in a hurry when I had a not-wonderful consult. Does that mean I’m part of a movement? I thought it was just life.
I don’t like calling myself a feminist either, although I spent a big chunk of high school toting a dog-eared marked-up copy of The Female Eunuch. I went through that I Am Woman, Hear Me Roar phase. I’m not interested in getting into the healthcare equivalent.
I’m wondering if we even need new words. As you know, I don’t like “consumer.” It implies a transaction at a much lesser level than the care of human beings. I truly don’t see the problem with “patient” but don’t have a good alternative to offer. As others have pointed out, we’re all people. Maybe we should start there.
Jackie, I agree. A couple of specifics:
> If someone isn’t using the word as a weapon
> I try to take it in the spirit that was intended.
You and me both. I’ll just add that this discussion exists because not everyone’s that way. I’m trying to shed light by pointing out the mismatch, which not everyone notices.
> don’t want to see this harden into ideology and labels
Me too! :–) All the more reason to shed light – or perhaps “convert heat to light.”
> I Am Woman, Hear Me Roar
Funny, I was just thinking of that yesterday. When I was a kid (“in the olden days,” as my daughter says), “woman” connoted the weaker sex. Kind of ironic since no man ever went through childbirth. In my experience that Helen Reddy song was one of those moments where the people involved took ownership of the language in a new way.
> we’re all people
That’s the sentiment of Jessie Gruman, former co-editor-in-chief of our journal. She doesn’t much like the word patient… so she has a rough time with my nickname.:–)
No rigid ideology here – I’m only interested in helping create a new reality. And any scientific thinker must always be ready to realize his/her own view might not pan out.
Okay, I’m done… good discussion, thanks.
Definitely a good discussion and I agree the dialogue is important.I’ll be curious to see how this all pans out. I do plan to check out your white paper & more of your site, I just haven’t done that yet. My observations are based more on some of the discussion I’ve seen that has bordered on strident. None of us need that.
I do not see you as an ideologue in the least.
I like “health learners” because I think it reflects the motivations of people who are grappling with the health system (seeking information that helps decision-making). However, I certainly use the word “patient” because it’s still widely accepted, the alternatives all have issues, and it’s cumbersome to write why I personally have some hesitation about using the word (for all the reasons you and Fred have noted). However, I still think it’s important to grapple with meaning and I’m very glad you and Fred have written your blog postings,
I also agree with Jackie, dialogue is important and my holiday wish is that in this age of microblogging and rapid information consumption, we give each other time to establish some context and create dialog.
I like the sound of health warrior because I feel I am a warrior while trying to take charge of my own health and treatment. Alternative medical advocate for health would be okay too. I don’t know about Alternative Medical Warriors. Just some of my thoughts.
I should add that there’s also a discussion about this (“What’s in a name?”) on the listserv (email list) for members of the Society for Participatory Medicine. It costs only $30 for individuals to join (here).
Fred and Dave,
This has indeed been a deeply thoughtful and important discussion. I for one am strongly in favor of redefining the word patient. Despite all the problems with the word (and its old definition) it is firmly entrenched in the lexicon. Trying to replace it will be a challenging endeavor.
Words get redefined regularly. Think about “bookmark.” How many of us use bookmarks every day…but not in the old sense of sticking something into the physical pages of a book. Ask a teenager about the original meaning of the word and she would likely look at you quizzically.
I am hopeful that in a few years when people use the word patient they will mean what Fred says above and it will encompass the concepts of e-patient, patient 2.0, patient advocate, cautious patient, consumer, expert patient and so much more!
The lexicon accomodates change when you actively change it and start using more precise language and more contemporary language.
Right now, “patient” is a misleading and vague term referring to anyone who consults a medical professional. It is archaic for the purposes of the new ways we get information. Old terms =old thinking = old practices.
If Tom were alive, he would lobby to use more accurate terms–he was very aware if the movement being in its infancy and needing to dig its way out through innovation.
I’m truly disappointed at the wool gathering…
Hey Earl – I don’t think I’ve crossed paths with you yet. How did you know Tom?
no other alternatives in a capitalist consumer culture
Christine, your comment suggests there are alternatives in other cultures. Sounds good; ideas?
I love this issue. Personally, I believe the words we use and their meaning co-evolve during revolutions, in largely unpredictable ways. My guess is this patient vs. consumer argument is indicative that changes are afoot, that progress is being made. I don’t think that progress is held up while we reach consensus on the language. At least I hope, anyway. Interesting post!
Aaron, great to see you here!
All, the other day I saw a tweet from @PFAnderson about a post on Aaron’s “Adjacent Possible Medicine” blog (he’s a 4th-year med student), Patients as Consumers: The Milkshake Mistake. As the post explains, it’s a reference to an example in the often-cited The Innovator’s Prescription. See his post for details; long story short, it’s about vendors not realizing what their customers actually want and value, because vendors are naturally wrapped up in what they think they’re producing.
I have a number of issues with that book, but they’re too much for a comment stream on a year-old post – perhaps we’ll discuss more in a new post. For the moment I’ll just say this:
Yes, Aaron, I think “vendors” in the medical marketplace (providers) tend naturally to think about the “milkshake” they designed and were trained to deliver – it is, after all, the expertise they studied hard to learn, and it really does contain what it was designed to contain.
But step deeper into Christensen’s disruptive innovation thinking, and imagine that the cost of milkshakes kept rising, inexorably, as shown in the Kaiser Family Foundation chart here. Pretty soon you’d have to start asking, “What the HELL are they thinking?? What are they doing with those milkshakes??” And especially, “Are the milkshakes getting THAT much better??”
After 2+years of attending 150+ conferences and policy meetings I’m reaching the conclusion that the people designing the milkshakes are working within their discipline but have come completely detached from what the people need. So, for instance, we see more and more people going uninsured, and inevitably living without treatments, and we see more and more employers going self-insured.
And, on the heartening side of things, this fall I started to hear consumer voices (community organizations) starting to say “HEY! We don’t WANT another frickin’ proton beam machine in our region – let’s take the same millions and build more sidewalks, bike lanes and playgrounds, so our kids STAY HEALTHY instead of NEEDING more treatment.”
This puts us at the very earliest stages of what IBM faced when the PC started to cannibalize its mainframe business: the dominant players are at this stage very unwilling to start de-emphasizing their most lucrative business. (There are famous exceptions but that’s the big picture.)
And that, IMO, is what Prescription missed: it talked mostly about innovating within a broken system, when the biggest overall problem is that in the classic pre-disruption scenario, the real problem is that the inflated dominators are utterly unable to imagine how to stop costing so much – even if it drives them out of business.
Okay, awesome. You totally have me with that.
In this pre-disruption scenario, we’re still looking for the one size that fits all; one classification of patients (consumers vs. otherwise), one piece of legislation, treatment-focused vs. prevention-focused, accessible primary care vs. sophisticated specialty providers, etc.
The post-disruption scenario promises one thing above all else; patients don’t have to be treated as one size. Those who want to be treated either as consumers (who are happy to trade in some privileges of privacy for access to the latest and greatest) or not can have it that way. Those with advanced conditions can get the treatments they want because the technology is cheap AND personalized. Those who want prevention can pay a reasonable price for it. Primary care providers have great reach, and this doesn’t come at the expense of specialists’ sophistication.
If Christensen et al’s outlook comes to pass, we honestly can have it all, as long as the disruptive tech works and payment schemes enable patients to pay for it, rather than paying for insurance companies to manage their transaction costs (and the medical community is able to adapt to it).
If it comes to pass, the language we use will be irrelevant. The legislation will be irrelevant. Hopefully, even the structure of medicine will be irrelevant.
I can’t cite a lot of evidence, but I will offer this: Look at how many irrelevant things were in the mix before the internet showed up. It caught everyone completely by surprise, and now it’s a whole new world. Before the internet, people managing legislation thought that legislation would be the next big thing, and people in business and people in research thought their own sphere would be it.
Healthcare is just late to the party, but it’s arriving now, and all the yelling will settle out after everyone gets what they want.
I hope :)