There’s a conversation brewing over use of the term ‘e e-patient.’ The online health revolution is over, it’s been suggested. Web use, after all, has become so widely adopted that the term ‘e-patient’ may have more historical meaning. Dropping the ‘e’ might indicate that we’ve arrived.
I’m not so sure.
Perhaps the revolution we thought was going on never entirely took off. Or maybe it’s all about how you define the revolution.
Here’s what I see: Day in and day out over weeks and months hundreds of patients visit my clinic. I talk to them candidly about the tools they use and how technology and community is changing how they see their problems. I do the same with friends and family members. And like it or not, they’re a lot closer to 1.0 than many of us would like to think.
Crowdsourcing, record portability, user-generated health and even simple patient communities are things that many are likely unable to define, and even less likely to use. I’m saying nothing of their capacity. Many patients I speak with have no idea of their capacity. And empowerment is irrelevant to a patient unaware of their potential.
We need to be careful not to assume that the voice of a remarkably engaged minority of patients represents the voice and understanding of patients everywhere.
There’s a lot more work to be done before claiming any kind of victory. I wouldn’t be quick to drop the ‘e’ in e-patient and may suggest that in many cases it has yet to be added.
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Completely agree with this, even though I’d hope otherwise. There is a highly educated and engaged segment of the population the “e-patient” concept refers to. When it gets down to push and shove, the majority of men and women don’t have a clue what all the social media talk is all about. They’re too busy working, raising families, and carting children around. We have to be extremely careful that we aren’t talking to each other because we like what it is we have to say (even if the majority of us ARE charming).
Jody
I call it the shiny echochamber of social health. We like to talk to one another. Sometimes I think we need to do more talking with the outside world. Thanks for you comments.
I agree with you in many cases it has yet to be added. I don’t consider myself an e-patient because all my interactions with my doctors are still in person or on the phone. I think the revolution is over for the most part in terms of online research, but we sure seem to be feeling our way through direct means of communication such as Facebook or even regular e-mail. It will be real interesting to see where this goes.
You’d have to consult someone with more expertise than myself but if I’m not mistaken you can put the “e” there if you’ve ever investigated health-related issues on the web. But I may be mistaken.
Thanks for your readership, Jackie. Whenever I turn around, you’re there : )
Bryan – you’re right – there is great confusion about that “e”.
The originator, Tom Ferguson, intended it stand for engaged, empowered and more – but most people have no idea that’s what it means. They leap to the assumption that it means electronic.
I prefer to use “emPatient” – because it does address people who truly engage and are empowered – and isn’t so easily confused.
And I don’t believe it’s about an online revolution at all. I believe it’s all about people beginning to understand they must take a pro-active role, in collaboration with their doctors, in their own medical decision making.
It’s not what you call it – it’s what you do with it.
Trisha Torrey
Every Patient’s Advocate
Hi DrV,
I think I need to write another post: 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. In fact, 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).
Your last reply on this page hits the nail on the head: “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.
We really need a transcript of the half hour BlogTalkRadio discussion Wednesday discussing all this, including Susannah’s story of Doc Tom’s early use of the term.
As I recall, the remarkable thing was patients being empowered and engaged, and in the 1990s that meant being equipped and enabled – online. The online demographic was the crest of the wave. Today the wave has engulfed nearly everyone, including those who aren’t in the least empowered.
I keep on reading what Tom meant by e-patients, like in Trisha’s “The originator, Tom Ferguson, intended it stand for engaged, empowered and more – but most people have no idea that’s what it means. They leap to the assumption that it means electronic.”
In fact, when Tom came up with the term in 1999, he meant ONLY electronic and nothing more than that. It is important to remember that he added the additional meaning over the years, as he kept on studying what the network effect was doing to patients and medicine. In that sense, it is easy to understand why Susannah writes “the revolution is over”, since now most people are online. It is also clear that patient activation across an entire society cannot happen in just a few years and will take probably a generation. But it is hard to imagine that the next generation of patients, who are living with Facebook, will accept the words from their doctors without checking online what their friends, family and other patients would recommend. In that sense, Tom was prescient (as always) and nothing he wrote has become obsolete