New Terms for New “Patients?”

The notion of Health 2.0 and the Participatory Medicine Movement has been gaining momentum. Now, more than ever, people are taking the management of their care into their own hands. As with any movement at a critical point of growth, debate about appropriate terminology is playing an increasingly important role. Although unanimous agreement is unlikely, semantic discussions can provide a vehicle to address key philosophical details.

An intense dialogue around patient terminology has emerged among the Society for Participatory Medicine members. Responses vary greatly but the question seems simple enough: What word should be used to refer to a patient?

The conversation has and continues to spawn insightful blog posts, such as those on JOPM.org, fredtrotter.com and e-Patients.net. But, below, we’ve provided select excerpts from both public commentary and the raw member e-mail exchange.

These comments bring up excellent issues but they don’t capture the full story. We’d like to hear YOUR thoughts. What is the influence of existing terminology? What is the potential influence of new terminology? Should certain terminology only be applied on a contextual basis? What does this debate indicate about the progress of the movement as a whole?

Other
In Support of a New Term
It’s Contextual
In Support of the Existing Term “Patient”
“The social movement revolutionizing all aspects of medicine cannot work with the old technology of archaic, passive language. And language is the most powerful technology we have – like the mother technology that makes us who we are, what we want and where we’re going possible.”– Lynne Farrow
“Participatory medicine goes far beyond the interactions between patients and health professionals. It is about the active participation of the individuals in their care. As such, like many others, the terms don’t bother me but the current practice of medicine does… Are you a patient only during the patient-doctor interaction or do you consider yourself a patient all the time?”– Gilles Frydman
“Nobody was born a doctor. Everybody was born a patient. [This is] not because of the medicalization of delivery, but because [of a] newborn’s need for someone – a parent, doula, midwife, doctor, stranger – to cut their umbilical cord. Some of those patients will one day do the same for others.” — Alan Greene
“Why not ‘users of health system’ or shortly ‘users’… They are using [information technology] to share and collaborate with peers and health system, doctors, nurses, etc.”–Manuel Armayones
“I alternatively use health citizen, health consumer, e-patient, patient, caregiver, et. al, depending on the context in which I’m writing/speaking.”– Jane Sarasohn-Kahn
“It does indeed seem that a historical definition of the word [patient] directly implies passiveness.”– Fred Trotter
“As patients/people continue to educate themselves and take an active role in guiding their care, the term patient has the potential to evolve on its own without needing a replacement. But, for that to happen, the term would need to be openly accepted by those who seek to change it.” — Lisa Emerich
“Like Lisa Emrich and others, I have never felt passive, nor insulted, by the term ‘patient.’ I truly dislike the use of ‘health care consumer’ and don’t feel ‘client’ is right either. A client hires someone to do a job for them, not with them as participatory patients prefer.” — Trisha Torrey
“[The term] client doesn’t mean the professional is working for you, it means the two of you are working on the issue together. A lawyer isn’t effective if he doesn’t have the full and active participation of their client. Therapy goes nowhere until the client wants to change and takes steps toward that change.” — John Grohol
“Removing the word ‘patient’ doesn’t make the doctor less-accomplished or the client any smarter. But it does remove the idea that there is a monopoly on medical knowledge and systems of care. Once you remove the monopoly idea, other concepts of privileged learning, institutionalized methods [etc.] are all fair game for questioning.”– Lynne Farrow
“At the end of the day, we are all patients – whether ‘em,’ or ‘e-,’ documented citizens or undocumented. If we want to communicate the precepts of participatory health and medicine, we can use the word ‘patient.’” — Jane Sarasohn-Kahn
“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?’” — Fred Trotter
“In my book, I use the term ‘emPatients.’ EmPatient, at least makes them ask the question – what does that mean? It means empowered. It means participation. It means an equal partner. It’s different enough that it gets the conversation going among those who should be paying attention.” — Trisha Torrey
“… we are talking semantics here. The word patient explicitly represents the individual receiving care wherever and however that care is given. It should suffice.” — Nancy Finn
“[the current practice of medicine] is far too focused on the patient-doctor relationship, while over ~80% of medical care is self-care, without the presence of any health professional.” — Gilles Frydman
“… healthcare is a team sport and a solo flight, a wave and a particle…” — Alan Greene
“Changing labels won’t solve this problem. What is necessary is a behavioral reassessment by many of the participating parties… ‘Patient’ is a term of art simply implying ‘a person seeking or needing the services of a healthcare provider.’ Why change it? If it is seen in that context it is a perfectly fine word. It is the behavior of the participants that is the problem, not the word. We could just as easily stop using the term ‘doctor’ and replace it with something else. After all, in England all surgeons are referred to as Mister or Ms., not ‘Doctor’ at all.” — Michael Scott
“… the notion that patients are consumers is pretty weak, but the notion that they should be consumers is a great idea.” — Fred Trotter
“There will be different ways of looking at this depending on the context. For everyday problems, non-life-threatening, not complex, a change in use of the term ‘patient’ will have very different implications than in other settings where major injury or death is involved. Chronic problems  differ from acute [problems.]” — Paul Bearmon
“Perhaps the next level of the discussion is to hone in on what it means to have a collaborative health care team consisting of the patient (‘e’ or ‘em’), the physicians, therapists, nurses, family members, etc. How does this collaborative team change the dynamic?” — Nancy Finn
“I do like the idea of using the word e-patient or something like it to denote a shift that can happen to change people’s relationship to their health and their health professionals: A fundamental perceptual shift occurs when the hierarchical, paternalistic view of medical care is replaced by an expansive view of the power of collaboration and personal responsibility to achieve health.” — Alan Greene

17 Responses to New Terms for New “Patients?”

  1. I forgot to make a point "in support of keeping patient". As I said earlier, Participatory Medicine goes far beyond the interactions between patients and health professionals. In fact since =~ 80% of medical care is self-care, why would you call people customers or client? These 2 terms completely negate the central role of the patient involved in self-care and keep everybody believe that all medical care happens in an interaction between a patient and a paid HC professional.

    • Alexandra Albin says:

      We are ultimately responsible for ourselves. And, the patient doctor interaction represents a minute portion of that experience. I have to make choices every day not just when I see a healthcare person. I always say and think, I am the CEO of my body. And, it is my responsibility. I don't understand why we would think otherwise. Frankly I think nitpicking over a word is wasting precious time for tackling the elephant in the room and a meager attempt to solve "a problem" when the real problem is something else and is less tangible than redefining a specific term…patient.

  2. Lynne Farrow says:

    What concerns me is so many in this discussion put forth their private meaning of the word, "patient." They don't seem to realize there is no such thing as a private language.

    Language is by definition the currency we all agree upon. You can't say, "for me, patient means…" without trying to create your own currency. That won't work. Try pulling out your child's drawing to pay your $20 co-pay at the doctor's office. You can't say to the doctor, "well, for me, $20 means a cute drawing."

    If many people are functioning as clients or consumers rather than traditional patients, they can't continue to invoke the old terms and say they don't mind being called an inaccurate, imprecise, misleading word.

    To perpetuate the use of an outdated word delays any progress in medical relationships and technology by years, maybe decades.

    There is a line in the movie, Field of Dreams, "if you build it, they will come." I urge people to grow the terminology to fit the function. Upgrade the currency and "they will come."

  3. Fred Trotter says:

    I love the colors.

    Thanks for putting this together…

    -FT

  4. kgapo says:

    Like Fred, I find the color coding very good folr easy identification.
    Would like to mention that we had similar discussion on Linked IN at the Patients'Page group which will be published this month by PatientView

  5. inchoate but earnest says:

    to Michael Scott:

    "‘Patient’ is a term of art simply implying ‘a person seeking or needing the services of a healthcare provider.’ Why change it?"

    Well, change it or not, "patient" is a subset of "people" – and a small-ish subset, at that. And health care really needs to start before 'patienthood'.

    • kgapo says:

      Μike, I agree that preparedness for health "incidents" should start well before we become patients. Here, I consider that health literacy, accompanied by digital literacy has an important role to play.

      I do not agree though that the term patients concerns only small parts of population. Maybe in the age groups 0-25, but from 25 onwards the percentage of persons with at least one health issue increases dramatically. From age 45 onwards one will rarely find a person with only one-two health issues. This might not be serious chronic diseases but also improper bodily function e.g. shortsightnedness that requires regular medical check-up.

  6. Susannah Fox says:

    I'll put in another "yay" vote for the color coding (and may I say, I just love this new blog in general).

    I am personally restricting my use of the term "patient" to situations appropriate to a clinical interaction (best articulated by Gilles above).

    I am also changing the terms in my research reports about internet users who gather, share, and create health information online. I used to use the term "health seekers" and then "e-patients" but I'm now trying to use the most general terms possible because using the internet for health is such a widespread phenomenon.

    Here's a commentary I wrote last fall that lays out my reasoning:

    http://www.pewinternet.org/Commentary/2010/August

    I'll confess my not-so-secret agenda for writing it: to get people to stop using "cyberchondriac." I had hoped to spark a "lay down your arms" conversation with that commentary, ie "I'll stop using my shorthand term if you stop using yours" but it backfired. See the 72 (!) comments I received on e-patients.net:

    http://e-patients.net/archives/2010/08/e-patients

    Thanks for hosting this and allowing people to explain the terms they use. Now let's get to work building, studying, advocating, or whatever it is you love to do other than debating linguistics :)

    • edbury says:

      Thanks for the kind design words, Susannah!

      I am personally restricting my use of the term “patient” to situations appropriate to a clinical interaction (best articulated by Gilles above).

      I was surprised that no one else had really latched on to "patient" simply being one way in which an individual is positioned within healthcare; i.e. the term patient is the name of a relation. The problem, in my mind, with the term is that it has come to identify a person and then proceeds to overwhelm their other relations (e.g. as "client", as "consumer", as "project manager" of healthcare).

      • Indu Subaiya says:

        But @edbury, the question is what is the definition of a relation? And what criteria can we commonly agree to about when one particular 'relation' is invoked vs. another. In the absence of that – the word patient does become a default/catch-all relation – and then the more it's used it comes to be identified with the person. Let's not forget that we still talk about a 'xerox machine' to represent all copiers, and i remember talking about 'kleenex' and 'scott towels' – when those were just 'brand' modifiers of a general term – of paper towels. Collectively I think we can all be lazy about language and it matters rather more in health than in retail and toiletries.

  7. Indu Subaiya says:

    I've been interested in this topic of terminology for a long time mostly because of my personal journey and the various hats I've worn/wear. But I do agree with Susannah that the more important work is to GET to work and not do the armchair linguistics thing for too long, but a brief digression!

    I remember growing up around a family of doctors and during my clinical years of medical school – the way doctors would talk about "patients" in the corridors or at dinner parties with just other doctors. The word "patients hate it when you.." or "patients love it when.." – it wasn't meant to be derogatory AT ALL but there was this general 'lumping' that went on informally – that did erect a barrier – there's us and there's them. And I got desensitized to that for many years till I started really thinking about the implications.

    Then in co-founding and running Health 2.0 its become a really PRACTICAL matter – "Oh god Matthew, what do we title this session!! The program goes to print in 10 minutes."

    And then as me the person, consumer, patient, Susannah's "healthseeker", I can't say ANY term really fits. I am still unfortunately like Goldilocks who has not found the comfortable chair yet.

    And what better way to handle unresolved issues than to share the burning question and debate with my favorite community in the world! Thanks all for your thoughts.

  8. Lynne Farrow says:

    Susannah writes,

    "Now let’s get to work building, studying, advocating, or whatever it is you love to do other than debating linguistics."

    Oh, Susannah,

    You may mean no disrespect but…

    I hope you realize how dismissive and dialogue-stopping the suggestion you put forth appears. Our hosts have taken time and effort explore the power of terminology and how it impacts our work and roles as medical stakeholders.

    To dismiss this discussion as just a "linguistics debate" is exactly like saying it's all silly "semantics" to fuss about whether women should be called girls.

    Of course we all have consituencies and areas of study, but to be urged to go back to them and not bother with terminology that profoundly shapes the future of medicine seems a little short-sighted.

    I would urge you to rethink how terminolgy shapes what we value, what our place in the system is and how we think.

    Thinking about the power of terminology pays big dividends down the road. Such forward thinking translates into greater decision-making abilities, clarified relationships and goals. I hope you won't dismiss the implications of raising questions about terminology.

    • Susannah Fox says:

      Lynne,

      Thanks for the benefit of the doubt – you are right that I meant no disrespect. Language is powerful and I wouldn't have commented if I didn't think the conversation was important.

      But I have to be honest: what we call each other is not the most exciting thing I'm seeing in this transformational moment for health care.

  9. Dave Foster says:

    Lately I've been hearing the term "individuals" used instead of consumer. Since the term is the generic word for "person" it doesn't have distinct role association with it. Therefore, the reader is not going to confuse "individual" with the clinician or any other professional actor. I still like "consumer" because there is a sense of agency with that term, as in "consumer safety" or "consumerism" = "consumer rights".

    • Lynne Farrow says:

      Thanks, for that insight, that the term, "consumer," conveys a "sense of agency."

      Because that term so closely reflects the technology and our adapting role, "consumer" will most likely prevail.

      Those who dismiss the importance of upgrading/updating terminology miss the significance of terminology as the most crucial tool in engineering the future.

      How can you plan ahead if you don't strategize the function of terminology?

  10. Alex Fair says:

    Great discussion folks, love the color coding. I guess I am green-blue seeking yellow.

    We debated this at some length in a work session run by my friend and co-organizer Lynn Nezin at a Health 2.0 meetup in NYC last year.

    I walked away thinking that "Patient Prosumer" was the best term. Don't ask me why, fortunately I though better of it before adopting the term for my site or blog. I have pondered on this a good deal since then, though I agree with Susannah that word choice may not change healthcare as much as the other stuff we are all doing. That stated…

    "People" is my favorite term for patients. If that isn't clear enough I add on a "who need care". When people come to our site searching for caregivers, they are not patients yet. Like most of us, they are seeking information or options. I use the term "patients" on the site a good deal too because I am already shaking things up enough with our app and don't need to challenge every aspect of the status quo. Even after treatment starts, emphasizing the term "People" retains the personal aspect. I admit, it isn't radical or perfect, but it is my answer for now.

    May I suggest a list of candidates and survey? This is probably the fastest way to figure out what will be adopted. I can ask Lynn for a list of all the terms our meetup of 60 people or so came up with that day.

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