Health Is Social

Infusing Social Media into Healthcare

Empowered. Unempowered.

Engaged. Disengaged.

Educated. Uneducated.

Enlightened. Unenlightened.

Electronic (digital). Analog.

Words. Words matter. Words matter because they have the power to do completely different things, like: clarify and confuse.

Does it matter what we call human beings who have medical conditions? Are they patients? Do we use qualifying words to describe them? Empowered patient? Unempowered patient?

Lately there’s been words about the word ‘e-patient’. “Should we use this word?” “Shouldn’t we use this word?”

Does it all matter? I think it all depends on who you are.

If you’re my provider, you can call me a muther effer – I don’t care, as long as you know what you’re doing, assess me appropriately, answer my questions or point me to reliable resources, educate me…But that’s me. Not you. Or him. Or her.

Recent discussions and the meta-discussions about them have raised questions about the appropriateness and necessity of words like ‘e-patient‘. Susannah Fox proclaims:

New concepts need gimmicks. Proven concepts do not.

An eternal truth, with one exception: a proven concept without an audience might still need a gimmick. And perhaps all the discussion about these words comes down to the desire for a noble gimmick. Not an easy desire to satisfy. It’s a tenuous endeavor, a marketing problem really – one which can be brilliantly executed…sadly, more often botched.

Here are two other voices – read their stuff and you’ll be able to follow all the necessary links.

Bryan Vartabedian (@Doctor_Vasks if the e-patient revolution is over. I didn’t know there was a revolution but he makes a solid point about the commonness of analog and the perils of the proverbial echo chamber. He also notes that many patients aren’t using electronic resources – we could call them Analog Patients I suppose.

In a French-roasted post, Daphne Swancutt of HealthIntel, makes the case for not euthanizing the ‘epatient’. In it, Daphne may have identified the key pivot in the chatter over words:

One day, we’ll get to a point when all patients are e-patients. Perhaps then, we go back to the future and begin anew with “patient,” which will implicitly suggest e-patient. But, we’re not there, yet. Not today. Not tomorrow. Likely not next year.

That’s it: she’s acknowledged that ‘epatient’ isn’t ideal but that perhaps – for now – we do need some convenient call-bell to signify and communicate where we’re coming from so that providers and others invested in our well-being can take the most appropriate courses of action with us.

Now I don’t know if ‘epatient’ is that bell (you can read my preliminary views on what I coined the fPatient here), but her argument seems to be at the crux of the matter. The trick lies in how proliferative the word becomes – and if the sender and receiver are on the same page of meaning.

Ideally, healthcare professionals should have the training and experience and therapeutic communication expertise to treat their patients in accordance with their unique array of characteristics – we all have different communication styles, personalities, levels of passivity or activity.

Unfortunately, when they don’t, patients (my God -what word do I use in this post?!) are left to their own resources. And that’s where adjectives and letters might make a difference: those with the resources can ring their call-bell to others – to rally support, seek curated information, learn more about their condition, etc.

HUMPTY DUMPTY HAD A GREAT FALL

There is no right or wrong answer here. What matters is meaning and communication and citizenry (more on that word in a moment). Perhaps an amusing moment from Through the Looking Glass is worth invoking:

`When I use a word’, Humpty Dumpty said, in rather a scornful tone, ‘it means just what I choose it to mean – neither more nor less.’

In its simplest abstraction, seeking and receiving healthcare is about finding and getting solutions to problems.

Some people are actively engaged in their healthcare. Other’s aren’t. Engaged versus disengaged.

Some people use digital technologies. Others: not so much. Electronic (digital) versus analog.

But here’s the thing: regardless of your empowerment today, it might be lessened or taken away tomorrow. You might be Humpty Dumpty – and all you can hope for is that either you’ll be put back together again or change your world-view and find liberation in dignified acceptance.

When you become an unempowered patient, you are no less human than before. You do, however, become dependent on others to impute empowerment onto your person and to confer onto you the full rights of dignity and care and technical expertise which any true civilization labors to bring forth into a world of chaos.

We’re not always empowered, regardless of what we do. There are times when we are varyingly unempowered. What happens when you become unempowered?

Who takes care of you? Who speaks for you? Who breaks their back to rescue your dignity from death?

Regardless of what words we use, the fact is: we ultimately depend on professionals who manifest their oaths everyday – from their care to their research findings. We need cultures of caring that lessen the need for linguistic work-arounds. The Empowered Healthcare Culture.

CITIZEN PATIENT

If you asked me what word I might prefer that we call patients, I’d say: citizen. Neither more nor less.

A citizen has rights and responsibilities. A healthcare culture that encourages citizens to exercise the former and assume the later, engenders a more optimal environment of communication and healing.

And as a citizen loses power – either by lack of resources or education or disease or despair – we are obligated to raise our voices. The provider becomes charged with empowerment. The Empowered Provider. (Laugh, but remember: when providers work with limited resources and loony policies, they become less empowered. The Unempowered Provider.)

But here’s an interesting example of the power of words: If I asked my providers to refer to me that way – citizen – I’m certain many would wince quizzically and maybe even become outright dismissive. Why would they do that? Because it sounds to some ears, well, kind of ridiculous. It’s totally out of place with what we’re used to hearing in the context of healthcare.

Institutional Habituation.

And therein lies a deep problem: if viewing me (the patient) as a citizen is the tiniest bit unsettling, that says something about the culture of healthcare.

Think about that: in a sane culture, citizen is a word that should never tempt dismissal.

So allow me to utter the ridiculous (‘cuz that’s what I do best):

The empowered patient is a citizen.

The semi-powered patient is a citizen.

The unempowered patient is a citizen.

We are not all patients…all the time.

We are all citizens…every moment, from birth to death, engaged or disengaged, educated or uneducated, electronic or analog, enlightened or unenlightened, empowered or unempowered.

@PhilBaumann –  @HealthIsSocial@RNchat

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  • Thank you, Phil!

    I am so psyched that I sparked this conversation, but I want everyone to know why I wrote that post.

    My point is not to tear down e-patients as a group (or cyberchondriacs, or emPatients, or citizens), nor to tell anyone else what terms to use, but to declare that, after 10 years of study, I’m ready to move the conversation from access to engagement. The access to information revolution is over. The new civilization that will emerge from that revolution is in its infancy.

    3 in 4 U.S. adults have access to the internet and 8 in 10 internet users access health info online. That is so well-established by research (mine and other people’s) that it’s become boring. I’m more interested in investigating what people are doing with what they find? How are they sharing what they find? If they don’t find what they need, are they creating it? There are a million great research questions (and business ideas if that’s the way you roll) that emerge when you get past the access question and get into the engagement question.

    • Phil Baumann

      Hi Susannah

      You’re good at sparking conversations! 😉

      I agree that we are getting past the access question and into the engagement matters.

      And yet, I wonder about the deeper data about access – just because someone has access to the Web, does it mean that they’re fully realizing its potential?

      For example, telephones once were rare but then they proliferated and became ‘boring’ technologies. Still: there were people who may have had telephones in their homes, but still weren’t strongly connected to the outside world.

      I don’t think questions concerning access and engagement have to be answered over two different timelines. I don’t see them two different stages.

      The history of technology is replete with socioeconomic and other segmentations of populations into other classes.

      I’d love to see the data, the deep-down data, about how people are accessing and using and engaging through these technologies. The thing is: that data is in flux, and probably increasingly so as the cycle of technological evolution quickens.

      Thanks for commenting!

      Phil

  • You had me at “empowered.” 😉

    Daphne (@daphneleigh)

  • I think semantics is especially relevant as we move forward. I understand the term e-patient to mean someone who is well informed because of the content and connections they’ve found on the Internet. But I think that definition will change as people start actually getting their medical advice and even treatment online. There is an active conversation going on on LinkedIn in the Health 2.0 group about outsourcing health care and what kind of medical services might be provided that way. When a doctor in India examines a patient in the US via webcam and other tools—as several suggest will be the wave of the future—that patient is definitely an “e-patient,” not to be confused with someone who is simply doing research online.

    So if that word is redefined and we want to make a distinction between patients who learn about medical conditions online and those who don’t, I prefer the term “informed patient.” Because while information is power, “empowered” suggests a kind of challenge to the health care provider that may create tension when the goal is to develop trust. (Think about any professional relationship, whether it’s between boss and employee, contractor and homeowner, lawyer and client, etc. If you tell the person from whom you’re seeking service that you are empowered, his reaction may be defensive. If you say you’re well informed, he is more likely to respect the fact you’ve done your research and treat you like an equal.)

    Words do matter.

    • Phil Baumann

      Hi Lisa,

      I like your point about Informed.

      I haven’t thought about the potential for tension – from the provider’s perspective – that Empowered could cause. It’s a point to bear in mind.

      I actually think there’s a wide array of terms that can apply, depending on the particular characteristics of different patients.

      Thanks,

      Phil

  • Philippe Ameline

    Nice post indeed,

    Citizen is a nice word, probably a word to be discovered again. I also use a simple, simpler, word: person.

    What we all would like to avoid is becoming just a body (more on this there http://philippe.ameline.free.fr/wordpress/?p=56) – simply a body or an e-body doesn’t make much a difference.

    And a patient (from it’s Latin root pateor, which means “to suffer”) is often barely more than a suffering body. Would an e-patient being much more than a suffering body with a browser?

    A citizen is a body “empowered” by a social system; a person is a body extended to a social environment (I will never argue that a e-person is a body empowered by a social network as they thrive on the web 🙂 ).

    To make it short, “citizen” is a political term while “person” is a social word.

    Since these terms are not clearly related to health, choosing one of them is a way to assert that health cannot be separated from citizenship of social matters… that health issues cannot be addressed at a dedicated level.

    Maybe we lack a term between “patient” (that is a pure medical term) and “citizen” or “person” (political and social), just to talk about a person and a citizen observed from the bio-psycho-social viewpoint.

    • Phil Baumann

      Hi Philippe

      Good point about a word between ‘patient’ and ‘citizen’.

      You mentioned something I’m just now connecting, which is that ‘citizen’ implies the political. And if you think about these other terms (empowered, etc.) they too are political in nature as well.

      Something to think about more.

      Thank you, Philippe!

      Phil

  • The debate about names could be divided twofold: using e-patients as a brand or using e-patients as a analytical concept. I’m not an expert in branding and marketing so I do not care much about this debate. But as a researcher the concept of e-patient does not allow us to understand the complexity of “individuals” using the Internet or ICT for health purposes.
    Here goes several examples about the relationship between individuals, empowerment and ‘e-patients’

    Who is empowered in e-health?
    http://www.ictconsequences.net/2007/02/07/empowerment/

    More information, please… vs. empirical evidence
    http://www.ictconsequences.net/2007/11/02/more-information-please-vs-empirical-evidence/

    The digital eHealth divide or The e-patient paradox?
    http://www.ictconsequences.net/2008/08/27/the-digital-ehealth-divide-or-the-e-patient-paradox/

    Congratulation for your post.
    Another quote from Alice’s Adventures in Wonderland. Charles Lutwidge Dodgson (1832 – 1898).

    “But I don’t want to go among mad people,” said Alice. “Oh, you can’t help that,” said the cat. “We’re all mad here.”

    • Phil Baumann

      Francisco

      Yes, we are all mad here! 😉

      Important point about the perspective of researchers.

  • Great post. It ties in well to the Markle Foundation press release about the Blue Button, empowering patients to get easy access to their medical records. It also fits in well with the recent USA Today article about patients taking more control over their care, asking questions, and challenging physicians more. In the end, maybe we are just people trying to enhance our lives by getting the information we need to make the right health decisions.