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July, 2014
Wednesday

(m)e-patient

Time flies. During the last couple of years the word e-patient has become very common amongst people advertising Health 2.0. On 10 May I was invited for a tweet up (in French) by Denise Silber. I was announced as e-patient. Not as ICMCC president, but as e-patient. Friends of mine told me last week they are doing a study into the definition of the word. And Susannah Fox published a blog yesterday with questions about e-patients. And to be honest, I was thinking about writing about this phenomena for a while already. But my condition keeps me from research and writing unless it really bursts out, like now.

In my perception, the e-patient is strongly related to the expert patient concept. Although it would need some research, I even like to think that the “e” in e-patient derives from “expert” in the first place. Both concepts are relatively recent. The first time the expert patient is mentioned in literature is at the end of the 1990s and “officially introduced” by sir Liam Donaldson in 2001. See also my article on the “Impatient patient“(2008). One of the first times the word e-patient is mentioned is in 2004 by Dan Hoch and Tom Ferguson, in an article in which they link the expert and e-patient. In 2005 I said at the BioMedea conference in Stuttgart:

“Thousands and thousands of scientific and not so scientific articles are being published every year. No caregiver can handle that amount of information anymore. Even within their own field it is hard for them to keep up, also because there are so many different ways to publish. In a patient safety point of view this might become problematic, as many doctors are not aware of the latest developments in their fields. In a number of areas we already see the phenomena of the so-called “expert patient” where the patient already has equal or maybe even more knowledge about his condition than the doctor. [...] The “expert patient” is something the doctors are slowly starting to accept, but they will be the common thing 5 years from now!”
Biomedea Conference, 23 September 2005, Stuttgart, Germany

That was 5 years ago. Now Susannah Fox asks help to a number of questions about e-patients. I will get back in a later blog on what exactly is, or should be, in my view, an e-patient. It certainly is related to the word patient and will probably be closely related to my definition of patient 2.0 empowerment:

“Patient 2.0 Empowerment is the active participation of the citizen in his or her health and care pathway with the interactive use of Information and Communication Technologies.”
Bos L, Marsh A, Carroll D, Gupta S, Rees M. Patient 2.0 Empowerment. Proceedings of the 2008 International Conference on Semantic Web & Web Services SWWS08, Arabnia HR, Marsh A. editors, pp.167, 2008

Am I an e-patient? Let’s use the list of questions from Susannah Fox:

In which stages of the diseases do e-patients usually need medical information the most?
This is already a hairy question. We only can search for information once we know what we are looking for in the first place. An old saying about illness in my country is “once it got a name, you reached half of the cure“.
In March 2006 I went into surgery for what was diagnosed as a somewhat exorbitant (size of an overgrown egg) haemorrhoid. A week later I was told it was cancer. The pathology report I received at that moment said it was malignant. I went to see the oncologist the next day whom I kindly told that he could talk “normal” language and not had to treat me as someone who could hardly pronounce words of more that 2 syllables. His very first remark was that I certainly had already looked up information on the internet. My reaction was that such a thing would have been non-sensical, as the only thing I got was the verdict malignant. It was then that I was informed it was an extremely rare case of NHL. So only then, when it got a name, I could look for information.

In which stages do they search for information about drugs?“.
In 2007 I visited Baltimore for a conference. I was rushed to the Johns Hopkins ER with cellulitis. It was made clear through an ultrasound that it was not a thrombosis, so I got treated with antibiotics. A drip. We also discussed the possibility of it being MRSA related. It was concluded that it was not. After half a day I was dismissed with an antibiotics prescription. Although I did not receive a copy of my then created record, they were kind enough to write down what was in the drip. I got back to the hotel, received my prescription pills and noticed an apparent difference in the names of the 2 medications. I went to the internet, looked them up and discovered that the pills were the usual broad specter antibiotics against cellulitis, but the drip had been MRSA specific. Had I known…. You get your prescription from a doctor when visiting him. You accept his expertise, so you do not ask him to allow you access to his computer and check all the aspects of the medication he is going to prescribe.

I suffer from a severe and somewhat rare kind of neuropathy. I went to see an oncology pain specialist, who listened to my very detailed description of the problems and prescribed me Lyrica. I did not doubt her expertise, although she admitted that my case was somewhat special and exceptional, so I got the pills. Once I had them and read the little leaflet, I discovered that the side effects of Lyrica were one-on-one identical to my problems. As a good patient, trusting a qualified medic and not willing to go back to the clinic nor being able to call her once I got the stuff because it was a Friday afternoon, I took them for 2 days, went through hell, and then flushed them.

At my second round of chemo, I was told that my cancer was a stem-cell cancer. 10 minutes before I was due for my chemo drip I was informed that therefore I should get a prophylactic treatment in my spinal fluid with metothrexate.  At the next chemo round, 3 weeks later, I was informed that they were going to change the prophylactic substance. I can’t remember if hethe name of the substance was mentioned, it probably has. However, by that time I had endured 1500mg of Prednisolon and 1000mg of Prednisone (and of course 2 rounds of the C, H and O of the chemo) within less than 7 weeks. I can assure you that by then you simply accept your doctor’s decision. I was definitely not informed about the possible side effects, which should have been done because it was a prophylaxis, not a treatment. It was only 1.5 years later that I found out from my oncologist, after much pressure, that it had been an experiment and that they did not know the long term side effects of that prophylaxis, Cytarabine.

How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
Of course I went to the internet to look for information on my cancer. But due to the rarity of the beast (plasmablastair B-cell Non-Hodgkin Lymphoma, CD 20 negative, not EBV related) it took a long time before I found anything relevant.
Of course, because of my weird neuropathic symptoms I went to look at the internet. And of course I asked the one million dollar question on various sites, a.o. ACOR: “Does anybody know of long term side effects of prophylactically and intrathecally used cytarabine?”. Nobody ever bothered to answer, for probably nobody has the answer in the first place.

Fox has no question about being empowered!
Am I an e-patient? After the chemo the PET scan still showed activity, but the surgeon did not perform an ordered biopsy because it was all “clean”. So when told that a broader area had to be radiated, to eradicate what was seen on the PET, I refused. 3 months later I asked if what was still and once again visible on the PET could be due to the fact that I suffer, since early childhood, from a restless colon the answer was yes. It is 3,5 years ago that I finished chemo and I never got radiated.

The last couple of weeks I have been thinking a lot about the concept of e-patients, also because the neuropathy has become more severe recently, probably because of the 6 different kinds of antibiotics within 5 weeks due to an open leg caused by an exploded cellulitis last October. And of course because it is part of what we do as ICMCC.

My answer is clear. I don’t know if I’m an e-patient. But I do know, I am a me-patient.

Lodewijk Bos

12 May 2010 | Categories: Blog.
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7 Comments

  1. I do not like the words e-health or e-patient because it sounds technology-focussed and that’s not what healthcare is all about. It’s about people, about human beings, about me-patients and we-patients. So thank you for this once again spot on blogpost!

  2. Susannah Fox says:

    I’m honored to have played a part in inspiring this post — I love the concept of the “me-patient” (and the “we-patient” too).

    The word e-patient is indeed taking on a life of its own these days. It was coined by my mentor Tom Ferguson, MD, founder of the e-patients.net blog and I use it somewhat in homage to him. I also have found it a useful shorthand for a wordy concept: “adults with internet access who go online to gather health information.” Now, that may be just how *I* use it. Other people use it differently and still others refuse to use it at all. Reading the negative reactions to the word makes me think I should give it up. I’m seriously considering that because it’s starting to become a distraction from what is important and interesting: the people behind the label.

    Thanks so much for this essay. When I posted those questions (and by the way, they are not mine but were sent to me) I hoped that they would spark a research conversation just like this one. I’m grateful.

  3. Jacqueline, I agree, being an empowered engaged patient doesn’t require the internet. And to me being empowered and engaged is the important part.

    Having said that, there’s no question at all that internet access makes a vast, even an enormous difference in what an empowered patient can accomplish compared to 20 years ago (pre-internet, for all practical purposes).

    And Lodewijk, to me you qualify as e-patient under Ferguson’s definition (he specifically talked about internet use) and under the non-internet definition. You’re deeply, deeply engaged in your care.

    On top of that, the details of your story make terribly clear how important it is for people to be engaged in their cases.

    I’m so looking forward to meeting you in less than two weeks!

  4. Brian Ahier says:

    Great post Lodewijk!!!

    You have such a powerful personal story. Thank you for sharing this with us…

  5. @stales says:

    Great post! a few thoughts – I don’t like the idea that people searching for health information online makes them an “e-patient.” There’s too much information and mis-information on the web to really qualify health content information seekers as “e-patients.” I’d argue that it’s what a patient does with the information that makes them an e-patient.

    • Lodewijk says:

      I agree with you. I think that Susannah has a point as well. IMHO e-patient was an indication of a certain, novel attitude, whether “e” meant expert, engaged or empowered. Now it is becoming a label and I don’t know if that is so positive.

  6. Lodewijk the labeling “thing” is exactly the reason why i posted this : http://lucienengelen.posterous.com/to-be-or-not-to-be-e-patient-or-i-patient
    i Sense a shift and also a growing community of e-patients. On one hand that’s great, let them step forward, on the other hand i see some hurdles and risk as i described briefly.
    With Dave i discussed earlier to adress this, so i did. Hope to ignite some discussion about it; which it does. and in the end still a clear definition, for those who need it.

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