E-patients, Cyberchondriacs, and Why We Should Stop Calling Names

New concepts need gimmicks. Proven concepts do not.

The phenomenon of using the internet to gather and share health information is now mainstream. It’s time to change how we talk about it, revising and maybe even retiring certain terms. Carlos Rizo and I invite you (everyone!) to join our discussion on Wed. Sept. 1 at 12noon Eastern: E-patients, Cyberchondriacs, and Why We Should Stop Calling Names.

Some history to build our case:

In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people “cyberchondriacs.”

In 1999, Tom Ferguson, MD, came up with the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He began work on a white paper, commissioned by the Robert Wood Johnson Foundation, to describe this new development.

In 2000, Lee Rainie and I wrote the Pew Internet Project’s first health report, The Online Health Care Revolution, using the phrase “health seeker” to describe someone who used the internet for health information.

Just to remind you of the sea change we’ve been through, in the year 2000:

  • 46% of American adults had access to the internet (now: 74%)
  • 5% of U.S. households had broadband connections (now: 66%)
  • 25% of American adults looked online for health information (now: 61%)

Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector — for-profit, non-profit, academic, government — has made it boring.

But I draw inspiration from Clay Shirky, who has said, “Tools don’t get socially interesting until they get technologically boring.”

Talking about people Googling for health info is boring. Talking about how health is becoming social online is interesting — even exciting. People are sharing and critiquing what they find. If they don’t find what they need, they are creating it.

In short, the data – Pew Internet’s and others’ — are quite clear that the online health revolution is over and that use of digital tools in tackling health problems is the natural state of affairs. Many of those who are involved in the effort to understand this shift believe that now is the time to build the new civilization.  Those who have studied the data and watched the struggle to call this phenomenon by an appropriate name think that means calling people who are part of this widespread phenomenon what they are: People.  They believe that the older labels like our “health seekers,” Harris Interactive’s “cyberchondriacs” and even Tom Ferguson’s “e-patients” now are less than helpful and accurate. They believe the right word is simply “people.”

Let’s talk about what this means — here in the comments or on Wednesday.

For more background on this discussion, please see:

Brian Reid’s post: It’s Time to Retire ‘Cyberchondriacs’

Jen McCabe’s post: The Redefining Patienthood Project Launches – Aims, Goals, and Many, Many Questions Ahead

Kevin Kruse’s post: What do you mean, “e-patient”?

Amy Tenderich’s post: “Patients” versus “Health Care Consumers”? Both, If You Ask Me

Dave deBronkart’s post: When the Patient is a Yahoo

My posts: Googlers vs. e-patients vs. cyberchondriacs and Cyberchondria: Old Wine in New Bottles

And from a different sector, also struggling with terms as they re-invent themselves:

Alex Howard: On Language: Putting Government 2.0 in Context

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Comments

75 Responses to “E-patients, Cyberchondriacs, and Why We Should Stop Calling Names”

  1. Matthew Holt says:

    So should we change the name of our next Patients only session session to People 2.0, and will Sussanah, Dave and the rest of you be boycotting conferences calling themselves “ePatients” :)

    • Susannah Fox says:

      Maybe! And, dear friend, I would also direct your attention to Alex Howard’s excellent post about Gov 2.0 terms and politely ask: What is the expiration date for “2.0″?

      • Susannah Fox says:

        Overnight thought/clarification: We still need the word “patients” and the word “e-patients” but we need to refine their definitions.

      • Matthew Holt says:

        2.0 just means “the next release of something that already was up and running” so it’s a pretty good terminology–and of course you can change the definition to suit yourself.

        Why not do that with ePatients?

  2. [...] and more exhaustive history of the language used to talk about educated patients, check out today’s posting on e-patients.net by Susannah Fox.) ‘Cyberchondriacs’: By: Brian ReidBrian Reid is a director at WCG in [...]

  3. Boring is great!
    Boring is important!
    Boring is the rite of passage from cool to truly useful.

    Just think of the telephone or Google searches. Both based on technologies, that are so successful that we just take them for granted and forget the incredible complexity of the systems used to make them boring and ubiquitous.

    The fact remains that the sudden evolution from passive to active patients, that we witnessed early on, surprised all of us, even those who were building online systems like John “Pathfinder” Lester, Dan Hoch, Mrs. & Dr. Greene and yours truly. We were all looking for terms that could describe what was happening, aware we were all involved in something really big that seems to have deep repercussions. That was the Wild West. And now, it’s just boring.

    NOBODY on ACOR ever proclaims “I’m an e-patient” or “I’m a proud cyberchondriac”. The real users of the health resources of the Internet call themselves patients. Now that most people are online, a population has quietly joined this revolution. It is now very boring and now fully in the realm of public health.

    The real work can now begin in earnest. Let’s move the conversation away from the evangelical and into the world of science. Let’s see how much evidence we can help gather to finally quantify the effect of this revolution. And THAT won’t be boring!

    • Susannah Fox says:

      I was a relative latecomer to the discussions led by Tom Ferguson, but I do remember those early days and the sense of wonder at what could/might/maybe happen. Well, now it has.

      To introduce a parallel: The same thing is happening to the term “digital divide.” Now that wireless internet access erases the differences between African American and white adults, the conversation has shifted from access/no access to quality of access, digital literacy, and other, deeper issues. I’d like to see the same thing happen in health: move the conversation forward.

  4. Jackie Fox says:

    I do online health research like most people, but I hesitate to think of myself as an e-patient. I also hesitate to think of myself as a consumer, as I discussed in a recent guest post on kevinmd.com. I think some of us are getting a bit carried away with that label.

    I can’t join the discussion Weds. due to work commitments, but I’d like to share a link to that post. Thanks. Sounds like a great discussion.

    http://www.kevinmd.com/blog/2010/08/patient-consumer.html

    Jackie Fox,
    Author, “From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer”

  5. Carl May says:

    I’m reminded of a doctor we interviewed in a study of the adoption, diffusion, and normalization of telemedicine systems. He said: “all the time it’s called telemedicine, you know that it doesn’t work. Once it works, it disappears and it’s just called medicine.” There have been great pioneers – ePatient Dave, for example – but much of what we see going on now is the normalization and routinization of technological resourcefulness. We need to find ways to support that.

  6. Sheba Muturi says:

    While I agree that seeking health information online has become mainstream in the US, the fact that almost 40% remain off-line is significant enough to warrant a distinction. Which means that IMHO, it is premature to call online health searchers simply “people” without excluding those who remain offline. It’s also noteworthy that globally, a much higher proportion is off-line although the mobile platform is helping bridge that gap.

    - Like Kevin Kruse, I have used the term “e-patient” and had people ask what I mean: is it simply finding info or also receiving treatment via electronic means? So unlike e-banking which is self-evident, the term needs definition. “E-patient” is catchy and convenient due to the multiple meanings [electronic, empowered, equipped, engaged...] but these can also cause confusion. Online may mean engaged but not necessarily empowered. Is off-line always same as “not engaged”? Consumer is a less loaded term that works much better for the worried well.

    - If we contend that the online health revolution is over, does the conversation need to shift to optimization – usability, health literacy, plain language…? I think the traditional web has grown old but social media and mobile tech remain fascinating – lots of potential but uncertain evidence base. Is it time to turn attention to those off-line? How many of them are offline by choice and how do we reach/engage them?

    • Susannah Fox says:

      Sheba, thank you so much for jumping off Twitter and into the comments!

      Your point about who’s not online (about 1 in 4 U.S. adults) and who is online but not using the internet for health info (1 in 5 U.S. internet users) is well-taken.

      Pew Internet research shows these groups are likely to be dominated by older adults (age 65+) who don’t have any internet access (themselves or someone they live with), have just dial-up access (which our studies show is associated with lower engagement in online resources), or say they are satisfied with offline sources of health info.

      I’m reminded of a quote from Jorge Reina Schement, who wrote in 1996, “Isolation is not distributed randomly; rather, it is concentrated in certain groups so that they suffer its consequences with intensity.” There are pockets of non-internet users, just as there are pockets of people who do not have a home phone. And now we see there are pockets of people who were not part of the online health revolution. That is a significant issue and one that I’ll continue to track, but it shouldn’t hold us back from talking about the majority reality.

      As to your second point, it is *exactly* why Carlos & I decided we needed to have this conversation in public. We chatted on the phone last week, just to jump off Twitter and its limitations. He can present his own point of view, but essentially, he found the same thing that you did: When he uses the word “e-patient” people stop and react, and not always in a good way. It’s a distracting word (as is “cyberchondriac”).

      On your third point, suffice to say that those are exactly the kind of questions I am interested in and would welcome your & other people’s thoughts!

      • Since we know that, at least for the US, there has been a significant under-representation of minorities in much of the health/social resources and since we also know that mobile is helping to minimize the digital divide the normal conclusion is to see mobile social apps designed specifically to engage these populations, in an environment they trust. I hope we’ll see an explosion of them. In that case “cool” may not be so bad.

      • This is a messaging / semantics / meme discussion, and as they said in the movie Inception, nothing’s more viral than an idea, so this is important. Plus, messaging is my major function around here. So this thread’s had me itching and twitching due to time shortage. I petitioned the gods for a two hour hiatus in the clock but they ignored me. So:

        > When he uses the word “e-patient”
        > people stop and react,
        > and not always in a good way.
        > It’s a distracting word…

        That’s incisive, with tactical implications: *introducing* the concept via an unfamiliar word can be a conversation stopper.

        Otoh, among a familiar, savvy, pondering audience, distinguishing the e from the not is useful. As we monitor and try to encourage change, I don’t want to ditch the distinction. It may be true that the revolution is over among policy people and our cluster here, but it sure ain’t won in street reality.

        A bit of self-scrutiny:

        I took the “e” as a brand to spread the meme in my speaking and blogging. The “stop and react” problem is why I start every speech by defining it and explaining its origin. See, there’s great communication value to arousing a moment of curiosity and then fulfilling it. But arousing and not fulfilling just leaves people confused, frustrated and skeptical.

        I then make a point, every time, of including the key factoids that explain how it could be feasible for patients to contribute something useful when they don’t have medical degrees. That’s still a vastly important point for people to realize, whether they’re clinicians, patients, HHS policy people, public health, you name it.

        Not sure where this leaves us. There’s one thing I do know – that’s in the next comment.

  7. [...] Article Susannah Fox, e-Patients.net, 30 August 2010 SHARETHIS.addEntry({ title: "Connect your community with a Twitter daily newspaper", url: "http://articles.icmcc.org/2010/08/31/connect-your-community-with-a-twitter-daily-newspaper/" }); [...]

  8. Lodewijk Bos says:

    I hope you don’t mind me adding some non-American voice to the discussion. (M)e-patient (http://blog.icmcc.org/2010/05/12/me-patient/).

  9. Fantastic discussion, congratulations! The same trend mentioned by @SusannahFox could be also observed World Wide, probably the inhibitors and facilitators in each country are not the same but the use of the Internet for health purposes has been growing since 2000 (http://www.ictconsequences.net/2009/07/08/health-and-the-world-wide-internet/)

    Normalization and routinization of technological resourcefulness (mentioned by Carl May) could help us to avoid the “e” and also to get through the 2.0 or even 3.0 period. Medicine and Healthcare has been always embedded into society and technological change, putting 2.0 or 3.0 labels could help MK but could also be too trendy to be boring and… it could move away citizens and health professionals

    • Susannah Fox says:

      I’m grateful for this perspective since one of my limitations is that my research focuses only on the U.S.

      Everyone, if you don’t know Paco’s work (@flupianez) you should.

      • Susannah I copy here my post about Europe with some data from Eurostat. To see the charts please follow the link

        http://www.ictconsequences.net/2010/09/01/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names-european-perspective/

        On August 30, 2010, Susannah Fox posted E-patients, Cyberchondriacs, and Why We Should Stop Calling Names starting a discussion about names. I think the discussion could be summarised in two main trends.

        On the one hand, e-patients name is still useful as a brand to spread the message of individuals utilising the Internet for health purposes. Therefore, using the Internet for seeking health information on injury, disease, nutrition, improving health, etc could be consider as a “proxy” to understand the diffusion of e-patients phenomenon. Susannah Fox has been analysing data from USA since 2000. It looks like that the use of the Internet for health in this country has reached a “saturation” point among Internet users, however non-Internet users and minorities, mentioned by Gilles Frydman, are still far away from this saturation point. As a part of this digital divide in Health, it is different to engage young or elderly populations. For the first group, talk about e-patient does not make any sense because, in plain English, they are digital natives while for elderly population is totally different. However, digital natives will be the patients of the near future.

        To tackle the situation in Europe I have collected some data from Eurostat checking Information society statistics based on the surveys on ICT usage in enterprises and households. They have gathered the following question “I have used Internet, in the last 3 months, for seeking health information on injury, disease, nutrition, improving health, etc.)”. I have developed charts of European countries and of EU 15, EU 25 and EU 27 for ‘% of individuals’ and ‘% of individuals who used Internet in the last 3 months’. All charts revealed a positive trend but Europe is still behind USA, even the penetration of broadband in Europe is bigger than in USA.

        Click on the image below to enlarge the chart to full viewing size

        http://www.ictconsequences.net/2010/09/01/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names-european-perspective/

        On the other hand, we have to realise that this proxy does not tackle the complexity of this phenomenon and its relationships with other variables, including digital and non-digital aspects of individuals daily live. Therefore, e-patient name could be considered as an inhibitor of this complexity and it does not help us to go deeper in our analysis. I guess we may have to find a balance between get bored spreading the message and get excited about deeper analysis.

      • Susannah Fox says:

        Thank you so much for posting this data.

        My research funding is restricted to the U.S., but of course I am interested in learning about the rest of the world and taking it into account when I talk about the impact of the internet on health and health care. I often assume that people know that I only study the U.S. but I shouldn’t. There are not many of us researching in this field and we have a responsibility to each other to set our findings in context.

        For those who, like me, are not familiar with all the country abbreviations, I found this list:

        http://www.europeancuisines.com/Europe-European-Two-Letter-Country-Code-Abbreviations

      • I have updated the country list abbreviations too. Thanks for the tip :-)

  10. Kevin Kruse says:

    Susannah, fascinating post and I continue struggle mightily with the right words. As you know, many at last year’s “e-Patient” Connections conference, protested the naming. From confusing, vague, unfamiliar, to don’t dare call me a patient, “I’m not my illness.” In fact many felt that using that word for a health communications conference itself was wrong in some way.

    And yet the pragmatic side of me says, what are the better terms. As Matthew alluded to in his response, should he rename Health 2.0 to People 2.0? Should I run the People Connections conference? Should health communicators sit in a strategy session and ask, “How can we get our H1N1 message out to empowered, engaged, equipped, expressive people-who-might-get-H1N1? who are also digitally enabled?” Just won’t fly.

    I think the creation of “e-patient” 10 years ago, and it’s rapid spread especially in the last couple of years has been helpful. Any movement needs a common language, even jargon. But we need to remember it’s a loose definition (which includes caregivers!) and is not meant to be pejorative.

    Having said that, if anyone has a better word, I’m all ears!

  11. DrV says:

    Here’s an interesting question: Is hypochondriac ever an appropriate description?

    • DrV,

      Sure, I can imagine that hypochondriac could be appropriate. To me it comes down to usefulness: does the distinction add understanding?

      I don’t know enough to lay out a great example, but I can easily imagine (for instance) someone being sure they have a kidney stone when they don’t.

  12. I LOVE this discussion, especially noticing the moment when something transitions out of cool and becomes simply useful, not even worth mentioning anymore.

    The people with the REAL problem are the good folks at Harris. They set themselves up in 1996 with a cute play on words, cyberchondriac-sounds-like-hypochondriac, which we now know is flat-out wrong. Ant that’s poison for a pollster claiming to depict reality.

    Reality: empowered, engaged patients go online to become better informed, often with great success. Blog after real blog shows this: diabetes bloggers DiabetesMine, Six Until Me and many others; Cushing’s bloggers Robin’s SurviveTheJourney and many others; high quality maternity blogs like Science and Sensibility, and on and on. All producing real (not imaginary) improvements in people’s lives.

    And that’s just blogs, not to mention the listservs on ACOR.org, which to this day contains the best quality information about treatments for my cancer – better than any website, public or private.

    Harris is stuck with a goofy term that fails to convey that this stuff is working.

    I’ve never spoken to anyone from Harris so I hesitate to infer intent, but as a career marketing guy I know the dilemma. Whether it’s Forrester with its Wave or Gartner with its Magic Quadrant or Edelman with its Barometer (Slideshare), once a thought leader has a schtick, it can be tough to drop. Establishing such a brand costs money, effort, and the passage of time.

    So what’s a thought leader to do, when a name proves to be completely off target?

    I’d welcome discussion with Harris folks. I think I know their pain, and maybe we could help. Here we are, considering whether our own “brand” needs to evolve; perhaps we can think this out together.

    • Dave you wrote:”not to mention the listservs on ACOR.org, which to this day contains the best quality information about treatments for my cancer – better than any website, public or private.”

      It’s not just the best quality info. It’s the best quality info AT ANY GIVEN TIME. The capacity of these patient networks to get relevant information, at a moment notice, is just amazing. Blogs like Amy’s DiabetesMine are much more didactic, but can never replace the amazing power to gather very hard to find information, which remains the bane of the long tail of medicine.

      • Gilles,

        > AT ANY GIVEN TIME

        Another sharp, incisive insight.

        I often say “to this day” but I’ve never noted that it stays true in an ever-changing world. Because the information on bookshelves and in previously educated minds stays still until refreshed, and reality constantly shifts.

    • Matthew Holt says:

      Speaking as a former employee who was there when they started using this term, how about a collection of you who care actually writing an email to Humphrey Taylor about it?

      I’d be happy to sheperd/share his email address?

      • Us getting in touch with an executive at Harris involved with the term “cyberchondriac”? What a marvelous idea. In fact I do believe I HAD that idea. Oh yes, I did. ;)

        (I do *so* enjoy punking you, Sir Holt.)

        By all means, invite him to join it, or whatever works. As I said, I feel his (imagined) pain, and I’m open to an open discussion.

        (Actually I’m the one who’s imagining he has pain, which I suppose does make me cyberchondriac – by proxy. Oo, how Munchy.)

  13. I’m not sure if “doing health” on the Internet is fully mainstream yet, but we are getting there…

    The analogy I like is that of “eCommerce” — the idea of shopping for stuff and actually purchasing it on the net once seemed revolutionary, and is now… well, boring?

    So in short, I agree: Soon we will no longer need a fancy special name for engaging in health activities online.

    Thx for the shout-out, btw!

    • Amy,

      I agree with the analogy. When people talked about having commerce on the Internet in ’93 they were told it would never happen. Some visionaries just made it happen. Not for the cool factor but because they saw some amorphous yet amazing potential. Some of these pioneers have not surprisingly be pioneer investors in some of the best eHealth entities.

      eCommerce has become boring faster than ehealth because it generates, easily, huge amounts of money and it is frankly much easier to generate a good user experience buying a pair of shoes than it is helping someone make sense of a diagnosis or understand the implications of a new treatment.

      ehealth, OTOH, even before it reaches maturity, will change in depth the financial component of healthcare, when it becomes clear we are all helping to optimize care delivery, in the full continuum of a patient experience. It is a much more complex pitch to make, as we have seen over the years. And it requires large datasets and their associated outcome measures. Which, unfortunately, we still don’t have. Hence my call to get a new funding program to build systematically the analysis tools that will finally move our efforts from “social media” to “part of clinical care”.

      • Susannah Fox says:

        Speaking of pioneers:

        John Lester, aka Pathfinder, aka BrainTalk communities founder/leader, has written a wonderful essay:

        How to build the impossible
        http://becunningandfulloftricks.com/2010/08/28/how-to-build-the-impossible/

        Two lines to whet your appetite:

        We succeed at building impossible things because of our deep yearning for the possibilities they make real.

        This is an important lesson. Because there are a lot of impossible things we haven’t created yet.

        And his closing quote:

        “If you want to build a ship,
        don’t drum up the men to gather wood,
        divide the work and give orders.

        Instead, teach them to yearn
        for the vast and endless sea.”

        -Antoine de Saint-Exupéry

        John’s was one of the voices I had in my head as I wrote this post yesterday. Listen in to what he has to say and you’ll be amazed where your mind can take you.

  14. Gary Oftedahl says:

    Wow, what a constellation of ideas, along with a confluence of many of my Twitter acquaintances, not to mention those with whom I’m personally familiar, in one way or another.

    The richness, and yet the diversity, of the input continues to raise my awareness of the many opportunities, yet the many obstacles, which we face. For some the use of the term “patient” itself is flawed, in that it imputes a suggestion of passivity in the relationship which while not justified will be hard to remove from the majority of our citizen’s psyche.

    ePatient Dave in his ongoing personal journey and quest for getting his “damn data” has been a part of moving from being new to being boring. The reference to Clay Shirky’s interesting and compelling TED talk was extremely useful to me. It is consistent with the writings of Chip and Dan Heath, in their intriguing book, Switch, which suggests (actually more than suggests) that for something to become a routinized part of our life it needs to move to being “automatic” not requiring an excess of will power or mental effort, which is in their terms an “exhaustible resource.”

    While there is great enthusiasm among many for the evolving PCMH or health care home model, I’m fearful that in many camps we are not paying attention to the assumed “shared responsibility” taken on by those using our health care system. As I read more about behavioral economics, get a sense of the psyche which drives many of our citizens, inculcated by a materialistic society in which we live, we have much to do to “normalize” this evolution of a patient to a fully engaged participant in their health.

    In fact, a term used by Donald Tapscott, in his sentinel book, Wikinomics, How Mass Collaboration is Changing Everything” may capture what is to be required by our citizens/patients. A “prosumer” is both a producer and consumer in moving forward. It will not be enough to address our consumers, but will need to consider how all become “producers” in managing their health issues. It implies both an increase in the control for the individual, but also a relinquishment of control by what has been a paternalistic, guild supported health care system.

    Won’t the next few years be interesting? It’s great to see Carl May’s Normalization Process Method noted. Understanding it’s more than adoption, more than implementation, but a fundamental need to understand what is needed to “normalize” a new concept which is essential. Thanks to all for exploding my thinking, and challenging my lens on reality.

    • Susannah Fox says:

      Thrilled to hear that we challenged your lens on reality here — as a self-described gadfly, that made my day.

      Also thrilled to know that I’ve infected someone else with the Shirky virus.

      Regarding one of your other points, I have to quote from @bacigalupe’s tweet to me: “It resonates with idea of normalizing rather than pathologizing…” (Very much hoping he stops by to expand on the theme.)

  15. Pete says:

    Great post, interesting thread, but I respectfully disagree. Engaged and empowered patients are as rare today as ever. “E-patients” are only boring if you define a patient as “e” just because s/he googles a diagnosis. My wife took my daughter to a dermatologist today and told the receptionist, “I’ll sign the consent to treat after I hear what the doctor has to say.” The doctor came in and started spraying liquid nitrogen on my young daughter without a word to my daughter or wife. My wife, said, “You should stop that because I haven’t consented to the treatment. I want you to talk to me first. My understanding is that we have options.” The dermatologist was stunned. My wife made her explain the options and then explain to my daughter what she was doing, why, and what to expect would happen. Only then did she consent to treatment.

    Empowered patients, despite Google, are still surprising.

    • Susannah Fox says:

      Pete, thank you for your comment. If you can’t tell, I love it when people push back on my ideas b/c it forces me to sharpen my reasoning and change my mind.

      In fact, it’s a disagreement that sparked this post. In 2007, when I started officially (as a Pew Internet researcher) using “e-patients” to describe internet users who go online for health information (the broadest definition of the word) I didn’t get why there was an objection to the term. It was shorthand that enabled us to describe that group and slice it even more finely in our publication: E-patients With a Disability or Chronic Disease

      But recently, when I saw people protesting the term “cyberchondriac” I decided to unpack why people don’t like that term OR e-patient. By stepping outside my glass house, basically, and talking openly with Carlos & other people, I finally grokked it.

      People are telling me that those two terms don’t make sense anymore for the broad phenomenon.

      Yet you are right that empowered patients are indeed still surprising. That may be the true meaning of “e-patient” and a usage that remains valid.

      In parallel, here’s an excellent paper by a team of Microsoft researchers from 2008 which may be a more accurate use of the other term we are discussing: Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search

  16. [...] E-patients, Cyberchondriacs, and Why We Should Stop Calling Names | e-Patients.net The brilliant and insightful @SusannahFox on the ever evolving world of online health [...]

  17. Joe McCarthy says:

    I’m a relative newcomer to the ePatient / Health 2.0 world, and in my enthusiastic naivete, wrote a blog post Wanted: a new word for patient … but which one?.

    I don’t know whether I really added much value then – or am adding much now – but I did find a relevant 1999 article in the British Medical Journal – Do we need a new word for patients? [I don’t seem to be able to embed the link, so here it is in its raw form: http://www.bmj.com/cgi/content/extract/318/7200/1756 – with a debate between a patient advocate, Julia Neuberger (arguing “yes”), and a physician, Raymond Tallis (arguing “no”). The comments on that article include a reference to an Australian poll on the topic. I review all of these (and other sources) in my blog post.

    All that said (or written), I came away from the exercise with a sentiment very similar to that expressed by Kevin Kruse above – “if anyone has a better word, I’m all ears” … but if not, well, I’m not sure how productive the debate can be. It might help inform others about the issues … but I think that can be accomplished outside the scope of a debate on a name.

    • Susannah Fox says:

      Everyone, please read Joe’s post — thoughtful and full of resources I plan to explore when I have more time.

      The semantic debate is a stalking horse for what I really want to discuss: “the online health revolution is over and that use of digital tools in tackling health problems is the natural state of affairs.”

      In my research I’m trying to focus on questions that take our understanding of the field to the next level, beyond the expected, the usual, and the known. That’s my challenge and I am grateful for all those (like you) who are helping me tackle it.

      • Jackie Fox says:

        Susannah,
        Great clarification. To your point that the online health revolution is over and the use of digital tools in tackling health problems is the natural state of affairs—I think that’s true with regard to using Web sites for research, but it seems like we’re just feeling our way using direct doctor-patient communication tools like Facebook, Twitter and even e-mail. I would see that as the next level.

        When I did that kevinmd.com patient-consumer blog I commented on earlier, a big side discussion was devoted to e-mail. And Rob Lamberts got quite a discussion going on his Musings of a Distractible Mind blog when he brought up the question of e-mail.
        http://distractible.org/2010/08/08/why-i-dont-accept-email-from-patients/

        And check out his fine post today “Getting Social”
        http://distractible.org/2010/08/30/getting-social/

  18. bev M.D. says:

    As an interested outsider and retired M.D., I agree with Dave and Pete that,while the name may be boring to you all, it is still unknown ‘out there’. When I discuss these issues with my cadre of well-educated lay friends, most have never heard of the name nor more about e-health than the basic google search for health problems. I try to educate them to the term ‘e-patient’, and now you want to change it??!!
    If you keep changing your brand you risk confusing the public further over what is, in my mind, simply semantics. I urge you to keep it simple,at least for now.
    Just my ignorant 2 cents.

    • Susannah Fox says:

      Hi bev – I’m a fan of your comments, so first, thanks for the 2 cents.

      I (luckily) am not the final arbiter on memes & terms & brand around here. I am sharing what I have observed in my work as a researcher and what I have heard in my travels online & offline.

      I go back to what Amy wrote about the wane of the term e-commerce: “Soon we will no longer need a fancy special name for engaging in health activities online.” That resonates with my research findings.

      And as Dave said in a conversation we had last week on this topic: the revolution may be over, but there is still plenty of work to be done!

  19. Great discussion. From the other side of the pond, I find it interesting that use of digital tools in health is now considered mainstream and that epatients is s term that we should consider retiring. Perhaps these are a US perspective, as I wouldn’t consider either the norm here in Australia.

    • Susannah Fox says:

      Thanks, Janelle – you are not alone in that observation. I can only speak for the U.S. because that is my field of study. I welcome perspectives from around the world — please tell us what you are seeing!

  20. Post got cut off….

    When I talk about epatients, I find it more helpful to rather reference empowered patients, rather than using the ‘e’. It gives people something they can grab onto easily conceptually. It is then possible to introduce the ‘e’ without too much confusion.

    That said, there is a big difference still between ppl that use the internet to find information and truly empowered people/patients. There is still a long way to go on that front so I think the term epatient has legs yet.

    With respect to use of tech in healthcare, we also still have a long way to go for people to have trust, and even vision to the benefits of technology in this space, at least inAus. As an example, less than 1% of our hospitals use social media, many still don’t have erecords, as as for integration of records, that is still a pipe dream. Systems like healthvault haven’t been launched in Aus although the labour govt seems to be in support of PHRs.

    Perhaps technology as an enabler is old hat in US, but that is not the case everywhere.

  21. Matthew Holt says:

    The great Farsi philosopher Freddie Mercury said it best at the Milton Keynes Bowl in 1982 (following criticism that Queen had too many disco/funk numbers on their not very good album Hot Space)

    “People get so excited about these things. It’s only a bloody record”

    And I have to say that definitions are there to be argued about….but not too much. This one is veering into the “too much” territory.

    Which is why I like to talk about things that are actually happening, rather than just rely on giving it the right name.

    And on that score, content search is mainstream. Nothing else that we care about (online communication between most patients and most docs, self management, tracking, easy data transfer, blah de blah de blah) let alone full partnerships between most patients and most providers is mainstream.

    • Matthew,

      Your anglo-saxon “sense of humor” makes for a very good read BUT … I disagree with you, at least on one assertion :-)

      Good old online communities are soooo mainstream and they are sooooo boring that you were not interested in them when you started the conference! They were not 2.0 enough. And still aren’t! But, man, are they effective! Go ask the participants, they’ll tell you they use the most ubiquitous technology to communicate with others suffering from their condition. It won;t cross their mind that in fact they are involved in a form of social media as sophisticated as Wikipedia. Because the technology we use is old and boring. YEA!

      • Matthew Holt says:

        Au contraire mon frere. Online communities whether old style list servs or new fangled ones attached to a profile (i.e. ACOR or PatientsLikeMe) are NOT mainstream in health care, and still not used by a majority of online patients.

        For example, the Paris public hospitals are not allowed to recommend online communities, let alone routinely channel patients to them–and only rebels in conference audiences are allowed to question their orthodoxy! :)
        (see around minute 20 here http://www.health2con.com/2010/08/16/looking-ahead-for-health-2-0/)

        And the rest of the stuff that will make a huge difference (easily accessible data, better provider-patient communication, care management tools used by patients, etc) is still in its relative infancy.

        So I am not saying that everyone here is wrong, I’m saying that we should be counting activity, not arguing about nomenclature.

      • Ah yea, I forgot that little detail in Paris… That was fun!

        You are correct about counting numbers. You may have noticed over the last 3 years that I constantly talk about unusual conditions and the long tail of medicine. More recently I have mentioned the dichotomy between the algorithmic medecine vs medicine in the long tail.

        I have even tried to convince susannah to include a question that would help us figure out once and for all if my assumption is correct. Said assumption is as follows: “In the world of the long tail of medicine, it is normal and expected behavior to join at least 1 active online community for patients/caregivers dealing with the condition. Not doing so is detrimental to your health”.

        The situation is clearly different for many of the usual conditions and I believe this is due to the lack of clear benefits in return for participating in an online health-related activity. Pioneers are creating the disruptive innovations out of necessity, not out of a revolutionary mindset. The early ACOR members. those who have helped shaped this remarkable resource, were usually grandmothers, albeit with graduate-level education that made them understand instantly the power of this networking medium. But grandmothers nonetheless.

        Makes me thing of the incredible “GrannyBarb“, a woman in her 70s, as brilliant and visionary as Tom Ferguson. Barb had a razor sharp vision of what she could achieve if she put online her entire medical history, including all the blood tests she ever had (see http://www.acor.org/leukemia/storydir/barb.html), as a teaching tool for all future hematologists and oncologists specializing in leukemias. It worked even better than her original expectations and in March 1999, she was one of the first appointees to the National Institutes of Health Director’s Council of Public Representatives (COPR).

      • On January 19th, 2008 I posted about the relationship between the “clinical iceberg” and “the long tail”. I like the idea of the long tail of medicine

        http://www.ictconsequences.net/2008/01/19/pathways-to-the-doctor-clinical-iceberg-and-the-long-tail/

    • Susannah Fox says:

      My goodness, I didn’t realize we were being so boring. Apologies!

      Truthfully, this did quickly become an open thread of sorts, with the terms being only a jumping-off point, as they were in my post.

      As I said on Twitter, I like to throw parties in my threads, never knowing where they’ll lead. Have you read all the fabulous posts that other people have linked to? I love what I’ve learned today from these comments.

      • Matthew Holt says:

        Susannah. I never said this thread was boring, but I may have meant that its usefulness is limited. “Interesting” and “useful” are not the same things (and if they were I’d spend a lot less time at the computer and get a lot more done!)

  22. bev M.D. says:

    Excellent, Matthew! I second your comment!

  23. [...] I’m having a weird, visceral reaction to all of the recent brouhaha surrounding the term “e-patient.” [...]

    • Susannah Fox says:

      (“Visceral reaction” always catches my eye – here’s my reply, re-posted here because I want to be crystal clear about my intent & my role.)

      Rock on, Daphne! (And I really mean that.)

      I would never presume to tell anyone what to call themselves and I think there is still a place for the term “e-patient.” But I think it does not describe the wide swath of Americans who use the internet for health info (61% of the U.S. adult population by Pew Internet’s estimate). That’s what I’m calling mainstream. E-patient may describe someone like you (again, not telling anyone what to call themselves). It may also describe many of the people I’ve talked with in my research over the years who take advantage of every technological and non-tech means to get the best care possible for themselves and their loved ones.

      My post is potentially a *good news* story if you think that the internet has been a boon to health care. I describe myself as an internet geologist because I describe what’s happening, the facts on the ground, but don’t make judgments about whether it’s a good or bad thing that this shift has transformed the landscape.

      Thanks for reading it and reacting to it. I really appreciate it.

  24. Susannah Fox says:

    Thank you to Carlos Rizo for hosting today’s call, which we limited to 30 minutes in order to focus on one topic: the meaning of the word “e-patient” and perspectives on it.

    Here are some notes I took:

    Carlos talked about how, when he began describing himself as an e-patient around 2006, other patients reacted negatively. They thought he was setting himself apart, when in fact he wanted to be inclusive.

    I talked about the origins of the Pew Internet Project’s research in this field and how I resisted the term “e-patient” at first because I wasn’t seeing it in our data yet. Now I not only see it, I see a distinction between engaged/empowered internet users and all those who simply gather health info online.

    e-Patient Dave said he sees himself as a change agent, driving the bus, whereas Susannah is watching the dials on the dashboard.

    Anita Beninger said that she uses social media as a listening tool, learning from patients about their experiences.

    Gilles Frydman objects to the use of the word “e-patient” by marketers, says original intent was patient empowerment w/o commerce involved.

    Brian Reid was drafted into the conversation to represent the dot-com POV – they are listening, learning how best to engage patients.

    Carlos thanked everyone for participating and noted that there are many other topics we could discuss in future forums – my observation about the online health revolution, outside-the-US perspectives, etc. He will post a link to the audio when it goes live.

    • Wonderful notes, Susannah. Thanks.

      I’d amend it to say I’m not quite *driving* the bus – it’s more like I’m one of the grunts in the back pushing as hard as I can. Or perhaps, I go around the bus pointing out that there’s somewhere else it could be.:–)

  25. Carlos Rizo says:

    Susannah,

    It was a pleasure to co-host the show with you today. As promised, below is the link to the audio.

    Again many thanks to the participants and to all listeners.

    Listen to internet radio with innovationcell on Blog Talk Radio

  26. Carlos Rizo says:

    Maybe this is a better link to the show:

    http://bit.ly/cxx9PP

  27. Susannah Fox says:

    I am afraid that I sparked a different conversation than I meant to, if these 3 posts are any measure:

    Me—An ‘E-Patient’—Unedited
    http://healthintelblog.com/2010/09/me%E2%80%94an-%E2%80%98e-patient%E2%80%99%E2%80%94unedited/

    Is the e-Patient Revolution Over?
    http://33charts.com/2010/09/e-patient-revolution.html

    Citizen Patient: Empowered and Unempowered
    http://healthissocial.com/communication/citizen-patient-empowered-unempowered/

    If you click thru, you’ll see my comments, all of which run along these lines:

    The access to information revolution is over. The new civilization that will emerge from that revolution is in its infancy. No WAY do I think that the tiny % of empowered & engaged patients represents the end of the e-patient movement. In fact, just the opposite: I live outside the echo chamber every day as I pore over survey data. It was by stepping outside my usual way of thinking that I finally understood why some of my friends & colleagues have resisted the e-patient term all along (read all those links at the end of my post, esp. Jen McCabe’s).

    Regarding the statement: “if I’m not mistaken you can put the “e” there if you’ve ever investigated health-related issues on the web.” I personally think that is not the most accurate use of the term and am going to stop using it that way. That’s what I was trying to say in my post (and maybe need to reiterate).

    Finally, other people can use the term however they want! I am not setting myself up as the William Safire of health. I’m just sharing what I have learned. I am MUCH more interested in the implications of what people are doing, not what we are calling them.

  28. DrRon says:

    I’d vote for hap-e-patients….Those who are ‘weller’ because they’ve learned something from others like them.

  29. Joe McCarthy says:

    Susannah: at the risk of beating a dead horse, I wanted to share an excerpt I just read in Harvard Magazine about Mindfulness – the unconventional research of Ellen Langer, which highlights the importance of the way we label things in the health field (and other dimensions of life).

    This may all be well-known to you and others who regularly read this blog and/or participate and advocate in the Health 2.0 realm, but I’d rather risk being redundant than withholding something I think is highly relevant to this thread. In addition to insights regarding the power of naming things and labeling people, Langer’s advocacy of mindfulness is very much aligned with the idea of e-patienthood (or whatever it comes to be called).

    Such findings [regarding the placebo effect] have very real ramifications for many fields, but none more important than health and medicine. This is the topic of Counterclockwise, in which she argues that our mindless decisions—our deference to doctors’ opinions, our willingness to accept diagnoses, even the way we talk about our illnesses—can have drastic effects on our physical well-being. In a study currently submitted for publication, Langer, Shelley Carson (an associate of the department of psychology), and Aline Flodr ’07 asked breast-cancer survivors whether they considered themselves in remission or cured. The “cured” group reported better general health, more energy, less pain, and less depression. The research was correlational: its findings suggest a relationship between variables, but cannot prove causation. But as Langer and her colleagues write, “[T]he extremely significant results of this study warrant further research and a possible rethinking of how to instruct breast cancer survivors to envision their relationship with the illness.”

    “Now contrast [the way we talk about cancer] to the language we use to describe a cold,” says Langer, embarking on one of her more controversial claims. “We think of each cold as a new one—we’re not ‘in remission.’ Why is a cancer-free survivor ‘in remission,’ but someone who’s never had it deemed ‘healthy?’” (Few, if any, have challenged this claim in writing—Langer has not yet published the “cured versus remission” study—but cancer cells, unlike a cold virus, can and sometimes do remain undetected in the body after symptoms have disappeared.)

    Langer believes that the more we adhere to labels and categories, the less open we are to possibility. “What if we called alcoholism an allergy instead of a disease?” she asks in Counterclockwise. “How many people trying and failing to have a baby are labeled ‘infertile?’…Why exercise and take medication if one is likely to die soon anyway?”

    “In medicine, we pretend that human biological responses are predictable, but they’re not,” says Deepak Chopra, M.D., who credits Langer with a profound influence on his thinking as a young doctor, and later as an author and lecturer on spirituality and mind-body medicine (see “The Chopra Prescriptions,” September-October 1989, page 22). “As doctors, we are trained and conditioned to look at the human body as a frozen anatomical sculpture,” he adds, “but you can have two patients with similar problems and medical histories whose outcomes will be totally different, depending on their own social variables and thinking.”

    This, too, is Langer’s point, which she hopes both physicians and patients will heed. Doctors don’t know when a patient will die, they know only what studies of other people have told them statistically. A “terminal” diagnosis, she says, may be a self-fulfilling prophecy. No records tell how often doctors’ prognoses are wrong.

    Although all her lectures differ somewhat, Langer often includes a PowerPoint slide with a quotation from Arthur Schopenhauer: “All research passes through three phases. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as self-evident.”

    Langer sees her work as largely still in stage two, but unquestionably headed toward stage three. “This theory [of mindfulness], it’s so simple,” she told the medical-school audience. “A third of people with virtually all disorders self-heal using placebos,” she said. But it’s not the placebo that affects recovery: “You’re making yourself better.”

    • Susannah Fox says:

      Joe,

      I shared this article on FB just last week and wondered if I should highlight it here, too — I *love* Prof. Langer’s perspective and think that it is definitely worth discussion.

      In fact, the placebo effect point really grabbed me since the Pew Internet Project has twice measured the % of internet users who say they or someone they know have been helped or harmed by medical advice found online. The % helped went from placebo range (31%) in 2006 to 60% in 2008. The % harmed was a flat-liner at 3%.

      We need more outcomes data, but I like to cite that stat as an example of how we don’t yet know where this road ends but it seems to be rising to meet a *lot* of people.

  30. [...] I’m having a weird, visceral reaction to all of the recent brouhaha surrounding the term “e-patient.” [...]

  31. [...] to Understand Social Networking and my part of it uses the “e” word that I recently tried to swear off: The E-patient is In: How Social Networking Can Make You A Better [...]

  32. Christine says:

    The proper name is Smart Patients Who Check their Doctors’ Work or the Pbysician Nervous Breakdown Network

    hate to say this, kids, but present company excepted, the gap will be more by generation than class or race as demonstrated by Naomi Hoffman’s “iCancer” ap for smart phones. Reports, dates, dx, tx, prognosis all in one, so when some physician asks you for the umpeenth time some impossibly difficult detail to remember, the Smart Patient sighs, opens the ap, and asks if they doc can just import the info to save everyone’s time and money

  33. [...] ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing [...]

  34. [...] Cell partners around the world launched an international debate about the meaning of an “e-patient”. In this Web radio broadcast of Sept. 1, Carlos Rizo of the Innovation Cell, Susannah Fox of the [...]

  35. [...] where’s the first place that you turn to for help? Is it the doctor’s office or the internet? A recent study showed that the percentage of American adults that had access to the internet rose from 46% in 2000 [...]

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  37. [...] to Understand Social Networking and my part of it uses the “e” word that I recently tried to swear off: The E-patient is In: How Social Networking Can Make You A Better [...]

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