This is a real treat – a guest post by SPM member and participatory pioneer Kate Lorig. Kate was a friend of our founder “Doc Tom” Ferguson, is cited twice in his e-patient white paper (see right sidebar), was the author of an important essay What will it take to embrace participatory medicine? One patient’s view in the first issue of our journal, and is listed on its advisory board.
Her bio (at bottom) doesn’t brag about it but in many circles she’s best known as the creator of CDSMP, the Chronic Disease Self-Management Program, a six week training that basically teaches patient engagement – teaches patients to be engaged in managing themselves.
Except now she wants us to maybe not talk about e-patients. See what you think.
My mother taught me that “Sticks and stones may break my bones but words will never hurt me.” She was wrong. Words can and do harm. It is for this reason that “nice” people do not use racial or religious epithets.
This brings us to E-Patient. The origins of this phrase are murky. It may have originated in Tom Ferguson’s 1996 book, Health Online. Tom was a true pioneer in defining a new, central role for patients and suggested the use of the Internet for health care. Ferguson defined e-patient as a medical consumer who is “equipped, empowered and engaged.” (Note there is nothing in this definition about using the Internet.) Today we tend to use the term as someone who is electronically engaged with their health.
The above explains a little about the “e”. Now let’s talk about the patient. The Oxford English Dictionary defines patient as “A person receiving … medical treatment. The second OED definition is a person “… to whom something is done,” (i.e., a passive recipient).
Immediately there is a dilemma. One cannot be enabled, empowered and engaged while being passive. However, the problem is much bigger. I, like most people with several chronic conditions, do not spend my life being a patient. Yes, I am a patient when I am in relation to my medical care, although my providers can attest that I am not passive. However, 99.9 percent of my time, I am not receiving direct care and I am not a patient. I am a person. Being a patient is only one small part of what I do. I am a daughter, professor, gardener, volunteer and friend. By the way, you can put E in front of any of these; in most parts of my life, I am electronically connected and empowered.
I knew Tom Ferguson and wrote for his journal Medical Self-Care. I considered him a friend and mentor. Nevertheless, I wish he had never used the term ‘e-patient.’
Mine is not a lone voice. Many years ago when we first started writing about self-management and designing chronic disease self-management interventions, the people we most wanted to influence made it very clear to us that they were not diabetics, arthritics, or patients. They told us very clearly that they were people with ____. They did not want to be identified as their disease or as a patient (passive by definition). In on-line disease specific discussion groups, I have often seen people discuss their dislike of labeling as a patient or by their disease. We’ve always believed that when you don’t know what to call someone, ask them.
The term ‘e-patient’ has run its course. It does not serve us well. The word patient should be reserved for when we are receiving health care directly, interacting with doctors, nurses, hospitals and clinics. As for the “e-“, let it rest in peace. Instead of labels, patients and providers alike should work toward enhanced communication and understanding. Being a patient is part of life. But it is not our total identity nor is it what we are when we seek advice from other like us, or look for health information on line.
Let’s stop promoting patient-hood as an identity. It is disempowering. I know Tom would agree that there is much more to life.
Kate Lorig, DrPH, is a genetic mutant, having been born with gaucher disease. She is a cancer survivor and has her share of common chronic conditions. She has maintained a fairly intense relationship with the world of health care and its inhabitants throughout her life. In addition, Kate is the director of the Stanford Patient Education Research Center, professor of medicine in the Stanford School of Medicine and a William Ziff Fellow at the Center for Advancing Health.
TONS to say about this. To seed discussion, here’s a start – several thoughts:
1. Progression of the movement: game on.
In my view this is a sign that our movement has moved up a step in the progression all cultural movements seem to follow: the people it’s all about start to grab the steering wheel, and that includes taking control of the language.
We saw it happen in feminism (the advent of “Ms,” and experiments with words like “womyn” (Wikipedia). We saw it happen in civil rights with the advent of “African-American,” etc. We say it with gay rights, where the movement itself declared “The word to use is ‘gay’.”
2. The horse leaves the barn: newcomers are using our language.
Re “e-patient,” the horse has clearly left the barn; it’s got a life of its own in the living language. Example today: the press release Diabetes Community Leaders to Spearhead Webinar on Engaging With E-Patients defines e-patients as “individuals empowered by technology to be actively involved in their health.”
In my experience the next thing that happens as a movement grows is dissent, as some start saying “You’re not radical enough,” others say “Up yours – you’re too radical,” some say “You’re doin’ it wrong,” others say “You’ve been co-opted by the establishment,” and on and on.
4. The wrenching part: taking control of what we say and thus how people think.
Language is where culture change begins to take root in the collective consciousness. LOTS of people object, in such times: “That’s not what I meant!” “Yes it is! Don’t tell ME what you meant – I know what you’re up to!” “Don’t use that word on me.” “What?? I didn’t mean any harm.”
In Kate’s post I hear an echo of what SixUntilMe diabetes blogger Kerri Morrone Sparling says: “Diabetes doesn’t define me, but it helps explain me.”
And that makes me think: to the person with a condition, the condition is just part of their life. TO A HEALTHCARE PROVIDER, when that person shows up, it’s as a RECIPIENT of care, which in THEIR context THEY call a “patient.”
I say, game on. Let the change unfold. What DO we mean by “patient,” and “e-patient”?
Kate, are you proposing a complete context shift, that the whole DISCUSSION has been centered around the provider, and it should be taken over by the person with the condition?
Game on, indeed. Glad I read your comment before posting mine. You’ve provided even more stuff to think about. #typical
There’s a similar discussion afoot regarding Slow Medicine, a phrases that’s gotten even less traction in America than e-patient and which describes an approach to medical self-determination (on the afflicteds’ part) and guidance (on providers’ part). As a careful wordsmith myself I am uber-aware how crucial right language is at the outset, for it both frames and creates context, and sets one’s trajectory—where a fractional misdirect at some onset can result in disasterous outcomes (think “missed moon shot”).
At this point, I dunno. Although I personally prefer not to hyphenate ePatient (and to capitalize the P), unless we want to end up with weird hyphenated construct, sometimes a catchy and/or metaphorically accurate, and unique, moniker serves best. I mean, do we want or propose to end up with “ill-human” (“IH”, to which I’d say “EH!”)? Or “peoplient” (people-patient)? Persient (person-patient)?
Hey: I vote for “persient.”
Kate, this is a great post! Very provocative and thoughtful (as always, from you).
I agree with Dave & you that this is all a result of a shift in the environment, and it’s time to re-evaluate the semantics we use to catch up with that evolution. I do feel that we are maturing to an era of “participatory medicine.”
Of course, for Dave, it raises the question of whether he needs a new nom de plume “PM-Dave” :-)
> whether he needs a new nom de plume
Um, no. :)
Seriously: the chocie of that name was intentional. Long before anyone non-local had heard of me, more than six years ago I learned of this movement and renamed my blog from New Life of Patient Dave to New Life of e-Patient Dave, in e-Patient? Yes, e-Patient. My purpose was just to spread awareness – “e-Patient Dave” was going to be my internet nickname, like “Pirate Bob.”:-)
And maybe sometimes someone would say “What’s that??” And we’d talk.
If it turns out that term needs to be retired someday, so be it. In the meantime, people in the “echo halls” of leadership need to be aware that almost NOBODY in the villages and supermarkets has heard of it – exactly the same as when leading feminists, civil rights activists and gay rights activists had advanced to a point in their thinking far beyond the mean.
So while someday “e-patient” may no longer be useful (and I don’t argue with that), I see that much work remains to be done, and I’ll continue using this name for the time being.
AND LET’S KEEP MOVING THINGS FORWARD!
Josh, another question –
Kate said “The word patient should be reserved for when we are receiving health care directly, interacting with doctors, nurses, hospitals and clinics” and I asked “are you proposing a complete context shift, that the whole DISCUSSION has been centered around the provider, and it should be taken over by the person with the condition?”
The latter resonates with the metaphor many have used in recent years, “CEO of my own health.”
Is that what you’re thinking, too?
I’ve been using ‘person at the center of care.’
Yes, words mean things, and our choice of words is laden with meaning.
This is a great time for us to focus on what unites us, the need to take control, and not on what divides us.
The Sixties taught us a lot about how to win (feminism, civil rights, the antiwar movement). So let us be clear about that: our goals are what unite us, and that should be front and center at all times.
I am not proposing a new name. We do not have to name everything. Just ask what people want to be called. At the garden club I am a gardener. We all have many roles. I just do not think that we should force one’s whole being to be patient. However, if that is what one wants, fine with me. This is not about semantics, it is about health and respect.
Kate, I just found this comment from 3 days ago unreleased – sorry for the delay!
More later when I get on the computer. ..
Hi again, Kate –
Apologies again for the blog comment delay. We tightened down a setting because of spam attacks, the never-ending battle.
> I just do not think that we should force one’s whole being to be patient.
That’s clear. So, what am I missing? Why do you wish Tom had never said “e-patient”?
Important post that, as others have already pointed out, reveals the ever-growing nature of language and its meaning. I’m especially interested in how digital technology (including but not limited to social media) has increased the speed with which communities emerge and change.
As I noted earlier today on Twitter, this conversation about who defines the meaning of patient (e-patient or otherwise) and who claims that identity is a socio-cultural conversation. I believe this can also be viewed through the lens of political economy, because power and money are drivers of almost all things healthcare.
Relative to my own identity, until recently I did not use “e-patient,” although I have long considered myself one. My reluctance had very practical reasons, such as risk of undermining employment opportunities and screwing up my already screwed-up health insurance.
In addition, having worked in and around the disability community for many years, I prefer the “with [x]” identifier because it linguistically distinguishes me from my condition(s)/disease(s).
I welcome this conversation about language, socio-cultural change, and community evolution. Like Jeanne, I think it’s an opportunity to zoom in on goals that unite. To this end, it makes sense to revisit the original goals of the participatory medicine movement, assess which are still vibrantly necessary, and whether the tactics being used (including but not limited to language) to achieve them are still viable.
Whereas my current business card (or is it a personal card?)reads “ePatient Peg”, it is really done to engage the recipient in the question as to why I use that term. The tagline is “Empowering Patients through Education”, which is my role in this reform movement. Of course, this movement is truly part of another movement, that of democratization of information, an outgrowth of basic civil and human rights.
I do NOT want the patient engagement phrase to become the pink cup holder equivalent of this essential reform. It has to be understood not as a marketing tool to lure in the patient to the Yelp page for the institution, but as a commitment to the respectful, informed participation of the several parties in meeting the goals of the patient. That commitment must also be dynamic in nature, as directed by the patient.
> it is really done to engage the recipient in the question as to why I use that term.
Yes. Same reason Ii noted above; no surprise. (Must be a side effect of kidney cancer.) ;-/
> I do NOT want the patient engagement phrase to become
> the pink cup holder equivalent of this essential reform.
Agreed – that’s why I think it’s so important for SPM to do what it can to spell out “What do we MEAN by patient engagement? Is there any ‘there’ there?” Obviously we know there is, but a lot of folks don’t, so it’s our work to articulate it.
Very interesting post, not sure I agree with it, but it is thought provoking.
Thinking through how it applies to me, as a person living with diabetes and insulin. Most of the time that’s what I am, a person living with a long term health condition.
When I need to interect with my healthcare professionals I’m happy to be a patient, but only if we redefine what a patient is.
We’ve done that with telephones, my smart phone is a very different thing to the old fixed line telephone that was plugged into the wall in the hallway when I was a child. We’ve done it with televisions. In the UK at least we had 3 channels and had to get up and walk over to the set to change channels. Very different to the smart TV hanging on my wall now.
Both have changed to become very effecient information and communication tools.
Our understanding of what a patient is can change as well. We can be smart patients.
My long term condition never leaves me, whether I’m interacting with a healthcare professional or not, so to be accurate I guess I’m a smart person at living with my long term condition. Smart because I’m aiming to be a very effective information gatherer and user, and an effective communicator – with everyone who can help me manage, and live with my condition.
Problem is thats a bit of a mouthful, and I cant work out a catchy acronyn for it either. I’m happy to compromise and be a smart patient.
I still use the word “feminist,” although I’ve been clubbed about the head and body at various times for said use. It says what it needs to (IMO, at least) about my belief that the fact that of possession of grrl-parts does not mean one is a 2nd class citizen.
Millennia of societally prescribed misogyny predate the coining of the word feminist, so I figger we’ve got a few millennia left before it becomes passé. I use epatient on my business card, since I don’t think it necessary to slap feminist on there. My age and gender should tip the gaff on that without my having to wear the label.
“ePatient” does not come as tripping off my tongue as does “feminist” – possibly due to longer usage of the latter. I have also grated a bit over having to use the word “patient” – added E or no – in my work to transform the healthcare system. Why isn’t “human” or “person” enough? Do we have to assume the semantic mantle of “patient” to define us within the healthcare paradigm? If so … WHY?
Medicine/healthcare is the most human of professional endeavors. Here at the beginning of the 21st century, we’re only just getting to the point where doctors are climbing down off their towers, and the people they treat (the “patients” aforementioned) are only just now rising up off their knees.
Maybe we DO need to shift the language again, and just say “people.” Might that move us more quickly toward a system working toward health rather than paying only for “sick”?
> Why isn’t “human” or “person” enough?
To some extent, obviously this is the old issue that everyone sees things from their own POV. The traditional provider view is that they set up shop, and the person who walks in with a need, they call patient.
As I said above, that would change if we shifted to viewing the whole thing from the citizen’s point of view, with providers coming to us, so to speak. But that’s no trivial change – generations or miilenia, as you say.
All, I apologize for the delay in posting comments – for some reason recently, WordPress (both here and on my own site) seems to have spasms where it starts holding MANY comments for approval. It just held my own comment! I went in to approve it and found several others.
I think this might be one of the most important posts in the modern phase of the Movement, maybe in all of healthcaredom currently.
Kate’s post, for me, opens the door for an important conversation about what it means to have ‘patient’ as a primary identity.
Patient, as a primary identity, doesn’t sit well with me. And, I recognize there is a secondary discussion about wether or not I’m even qualified to make that comment; although I’ll try to address that in my second concern.
First, I’ve wondered, at times aloud, if we should encourage people to be ‘professional patients’. Wether we are paying directly, or putting people on stage or providing other platforms for notoriety, I worry we are rewarding people for staying in a state of un-well. Even our own e-Patients.net blog and the Society’s mailing list largely focuses on rewarding people for reaching e-patient status. ‘Congrats, you’ve beat the first level, you now advance to the next round.’
I don’t want to be an e-patient. I want to be me, with my own autonomy; empowered because I am a human. Not because I am having something “done to me”. Kate’s words resonate strongly with me on that point.
But…something as subtle as a terminology change affects how I feel.
If we are talking about a different identity, people who identify as healthcare change agents (or other, better term) or are further along on their journey and are advocating for themselves or others, then I say: make them rich, famous and super stars and I’ll follow them to the end of the Earth.
On a second note, I also worry about patient worthiness. What qualifies one to be a patient, or an e-Patient? On one end of the spectrum, we’re all patients. We all receive some kind of care. Wether its being born in a hospital, or prescribed Lipitor, we’ll probably all be “[a] person receiving … medical treatment…”
On the other end of the spectrum are people who have endured or are enduring very serious health conditions. For some its episodic but highly acute. For others, it is chronic and a regrettable part of daily life.
Taboo? Yes! But, patient, as a primary identity, sets us up for levels, cliques and measures of worthiness. I’m not sure that helps the Movement.
Thank you Kate Lorig for this post and for ushering in the modern era of the Movement!
> patient, as a primary identity, sets us up for
> levels, cliques and measures of worthiness.
That’s an astute observation. Personally, I think the remedy is to raise awareness so we DON’T degenerate to cliques and status.
FWIW I have several heroes, and their existence in no way diminishes the others I know. If we kept score and kept statistics (like baseball) that might make sense, but we don’t. I seek exemplars (see above – my admiration of Kate) but I don’t belittle others.
One place to start might be a statement of our shared aspirations! In my talks I often say I want everyone to have access to what’s available. (I also want great clinicians to be recognized and rewarded and to feel SATISFIED in their work.)
I am finding this whole discussion highly ironic, as for years I fought to retain the term ‘patient’ in my hospital system, rather than the newer politically correct terms that the administration was experimenting with, such as ‘guest’, ‘client’ or ‘customer’. Or ‘consumer’. I feel that ‘patient’ expresses an entirely different experience than any of those other terms, which I found demeaning. Maybe I was wrong.
I’m regrettably late to this discussion. As a patient advocate who is relatively new to working in-house with clinicians, I use “Ms (Surname)” as often as I can. I have set *my* bar at continuing to use the word “patient!”
A common practice is to identify an individual by his or her disease state or body part, e.g. “metastatic” or “colorectal.” Do other providers find this practice changing?
Addendum – by ‘demeaning’, I mean that those words to me encouraged a transactionally based encounter rather than a healing relationship. But perhaps they are more empowering.
As for “e-“, Dave is right. Outside this community, people don’t know what you’re talking about. I have encountered that more than once while evangelizing on this movement.
I agree with Bev MD. The alternative’s at this point are “consumer” or “client.” That puts a relationship that is sacred into the semantic realm of the transactional. Well, there is also “stakeholder” but sadly that is not a Joss Whedon version on the word. I really wish Josh Whedon would create a new word for patients, but he is too busy writing Avengers movies. Sigh.
So I go to events as a patient. For much of the medical world that is a new concept. Sometimes I go as an e-Patient, but that is a bit edgy for many venues. We have not gotten to a place in medicine where the only word that truly represents our role can be abandoned.
Patient is a fine term for folks in hospital or direct health care. It, however, does not define me as a person outside of these settings.
maybe we need to have a virtual design challenge:
How might we label ourselves when we self-care or receive care in such a way that preserves our dignity and expresses our empowerment?
I wrote this to a friend right before I opened this blog- couldn’t have been more timely.
“I have been recently been waging a land use war against against a major development up the road from my house. I would have used rather dry facts for the community outreach, but wiser minds than mine have used factual, but emotional, appeals and we have been, to me, astonishingly successful.
The whole experience has been really interesting to me- the amount of up take, Facebook hits and re-posts (we’re not up to tweets where I am), website hits, letters to the editor, signatures to an on-line petition- so, what are missing in our health care revision work that doesn’t get this from people?
It is the stuff I’ve rather shied away from- the stories of personal injury, loss, poor care. There are a couple of factors to my historical reluctance to go there with our community’s “Patient Activation” efforts.
One is my own style, which tends towards privacy, another is wanting to avoid the “personality cult” that an e-patient Dave develops, and the last is because of our small community and a remaining personal reluctance to just plain raise hell with people I’ve had (some sort) of relationship with over many years (after all they will be giving me and my family care and if they get mad at me….).
So, while a catchy name with pizazz like e-patient might not be my style, I think it’s done a whole lot to stir up a bunch of conversation. What people aren’t talking about they’re not changing. ”
The last comment I’d like to make is about “activation”, or whatever we call “it” (no term really works for me, but you know what I mean) I’m a pretty activated person, but I sure haven’t been when in the middle of an acute, severe health care crises, so my goal for change is to have activation be supported and appreciated, but not required.
I fully agree with Bev MD when she says’by ‘demeaning’, I mean that those words (‘guest’, ‘client’ ‘customer’ ‘consumer’) to me encouraged a transactionally based encounter rather than a healing relationship.
I don’t agree with the thought ‘But perhaps they are more empowering.’ – they certainly don’t leave me feeling empowered.
I know that words do matter, but perhaps by discussing the term patient (with or without an e) we’re focusing on the wrong part of the equation.
What I’m really interested in is the relationship between people living with a long term condition and the healthcare professionals who help with that experience. Possibly when we get the relationship sorted out the words won’t matter as much.
Do we have a chasm yawning between those with chronic/permanent conditions, and those who only deal with the medical machine occasionally?
Perhaps a next move, as a movement, might be a robust discussion about how we can each/all inhabit our own POVs, while making it clear we’re all in this together … ?
This discussion could be expanded to include the overall language and culture of healthcare. For example, an inpatient hospital experience often begins with taking away an individuals identity. Everything goes into a bag and you don a johnny coat. A label is put on your wrist. There is a good chance you are now being referred to as the “gallbladder” in room 210. Need to use the bathroom? Better check to see if the doctors “orders” include bathroom “privileges.” Your medications are brought in an unlabeled cup, medications are “hung” if administered via your IV. Been managing your own diabetes? Sorry now your food and insulin are dependent on the hospital schedule and the doctor”orders” that control diet and medications. Language and culture rule. Oh yeah, time for discharge, now you are on your own…
Marge’s comments should be interpreted in context: she’s an RN PhD and assistant professor of informatics, AND wife/caregiver/widow – she knows something about (a) this intellectual stuff and (b) street reality both for the clinician and the person being treated.
This is my post from Facebook. Did not realize there was an ongoing discussion here.
Thought provoking essay. I think that e-patient transcends the common definition of patient and defines the movement. That said I do not consider myself an e patient 24/7, instead it is part of my overall identity. The word “patient” holds many of the same preconceptions as my profession – “nurse” – contains an inherent bias that through actions and evolving societal interpretation is changing. Nurses were once called the doctors handmaiden. I believe language and definitions can evolve.
I’m going to repost what I put up top as a fortuitous stream of consciousness but which I believe is highly relevant.
If the English language already had a better term than ‘patient’ we would have already adopted and be using it. It doesn’t, so…it’s time to make a new word. Consider that every year the dictionary gods proclaim x number of new, socially- or technologically-spawned groupings of letters to be dictionary-able words!
“Persient” is not a cute suggestion. It’s a hybrid of ‘person’ and ‘patient’ where the ‘s’ places the primary relevance on personhood yet the ‘ient’ is recognizable to both a real condition we experience plus the label that medical providers are comfortable with. I believe the notion has merit.
Would anyone using a novel term be viewed as too cute, as insubstantial? If so, in which environments and contexts? How does using any newly-minted term or phrase compare to, say, wearing a business garment with an acrylic painting on its back?
Persient or something else, I suggest that if we want new language we need to create it. Perhaps those with interest and time can mine latin, the language of medicine. Joel Selmier has done this by introducing nequamitis as a replacement term for ‘medical error’ (see http://www.patient-safety.com/errors-medical.html ).
Meh! Words do matter, but I have never taken particular offense at “patient” or associated that with a need to be passive. In the past there were some who felt that “health consumer” was more empowering. And that “patient care” should not be used. “Patients are consumers who are horizontal,” quipped one physician. In the end, it’s what we make of our culture. When we founded Medscape, I added the tag line, “the online resource for better patient care.” It was a homage to my friend Lewis Goldfrank, who runs the emergency service at Bellevue, and who, over the years has endlessly inculcated his staff to be “advocates for better patient care,” in the face of often heartless, uncaring, unlistening, and stupid bureaucracy. Clearly people have different health and medical needs over the course of our lives. Clinicians have to get over being “high and mighty” when they, of course, are just humans who don’t know everything. And patients need to do their best to understand all manner of expertise to the best of our abilities. I was skeptical that changing a word would help at this point. I’m happy to be an engaged patient, consumer, and human.
TO BE named/identified A PATIENT OR NOT?
When I was taking my BScN at Western University in the 70’s we were instructed to refer to patients as clients. This was the new title acknowledging our clients were more than what was CONSIDERED just a patient.
The name change or notion/gesture never amounted to anything. It fell dead because no one understood what it meant to be a client of the health care system. Was it the payer or the patient? It was a nebulous term that neither understood. Fast forward to the age of enlightenment.
Semantics or not, everyone does understand the name and the meaning of being a patient. The idea as many now struggle with is whether or not it is really meaningful to everyone to change the word we understand to be something MORE than just being a patient.
The problem & the issue of semantics is, it asks us to consider how others who think of themselves very comfortably being named a patient, may now be regarded as highly if they accept being thought of or named merely as a patient. Where then, does that leave patients who, like me, and feel very confident as patient, have no need to take on another persona vis a vis another conceptualized name? If those who feel they belong not in the realm of patient hood, lest it be considered beneath them, where then should they ascribe themselves to be?
The conversation is surely about respecting and understanding the needs of the person as a patient, listening to the voice of the patient, collaborating and sharing with the patient.
If this is what patients want because they are clients, customers too then being a patient is good in name.
The term ‘e-patient’ has run its course. It does not serve us well. The word patient should be reserved for when we are receiving health care directly, interacting with doctors, nurses, hospitals and clinics.
This was in the original post. I am noy trying to do away with patient, just not make it a whole identity or one outside of a health care setting.
Yes, I agree Kate…there is a time and a place when we are a patient. Beyond that status we are ourselves as described or defined by ourselves and others.
A ‘Sentient Being’ a person who thinks & knows their self.