E-Patients & I-Patients?

24 05 2010

I read an interesting post -or perhaps rather a kick-off for a discussion- at Lucien Engelen’s posterous blog:

“To be or not to be : E-patient or I-Patient.

Lucien feels that e- and i-patients are not the same:

  • An e-patient is a (ex-) patient able to advocate patients rights, needs, experiences and able to advice healthcare institutions in a neutral way on steps to be made in REshaping healthcare, so more an ambassador-role.
  • An i-patient is a patient who uses the internet for information, sharing moods, questions experiences etc.

People who comment on his post do not see the need for a division between e- and i-patients.

Freek Bodemeijer for instance found that the division would make no sense as nowadays almost all Western patients use the Internet to look up information. In his view the ambassador role goes beyond the usage of e-tools.

E-patient “par excellence” E-Patient Dave deBronkart has more or less the same opinion: two overlapping memes are harmful from a marketing perspective,  but in the academic / analyst world a taxonomy of E-patient subtypes would be helpful.

While I agree that creating more terms (and certainly abbreviations) is not always clarifying and while I’m also skeptic that one can force new definitions, Lucien touches upon an important aspect: “when is an e-patient an e-patient?”

The definition of E-patients is not unequivocal.

Wikipedia, the e-medium also for e-medicine (although not always as accurate as we would like it to be [1]) defines e-patients as follows:

e-Patients (also known as Internet Patient, or Internet-savvy Patient) are health consumers who use the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. (…)”

According to another definition (also mentioned Wikipedia):

They [e-patients] are equipped, enabled, empowered, engaged, equals, emancipated and experts:

  • Equipped with the skills to manage their own condition.
  • Enabled to make choices about self-care and those choices are respected.
  • Empowered
  • Engaged patients are engaged in their own care
  • Equals in their partnerships with the various physicians involved in their care
  • Emancipated
  • Expert patients can improve their self-rated health status, cope better with fatigue and other generic features of chronic disease such as role limitation, and reduce disability and their dependence on hospital care.
These two definitions of e-patients are overlapping but certainly not identical.
Use of Internet is necessary but not sufficient to become an E-patient in the latter sense (from now on written with a capital E to indicate the difference)

So in a way the former e-patient is what Lucien calls an “an i-patient”, a health consumer who uses the Internet to gather information about his/her/a friends or a relative’s disease.

This i-patient definition is in line with the definition and the current use of the word e-health:
eHealth (also written e-health) is a relatively recent term for healthcare practice which is supported by electronic processes and communication. (…) some would argue it is interchangeable with health care informatics (…), while others use it in the narrower sense of healthcare practice using the Internet. The term can encompass a range of services that are at the edge of medicine/healthcare and information technology, i.e.

But this definition does no right to the true meaning of e-health. I agree with the one-liner of Prof Bas Bloem, who initiated Parkinson Net in the Netherlands [2]

“Health 2.0 is not “the world of gadgets”, but a new way of thinking in healthcare”

Similarly, an E-patient compares to an i-patient (or e-patient) as a real web 2.0 attitude compares to being on Facebook or using whatever Web 2.0 tool.

Web 2.0 is “sharing”, in contrast to Web 1.0 which is “finding”.

So Lucien’s i/e-patient is only finding information and a true E-patient is sharing his/her own experience or knowledge to learn more about a disease him-/herself or to inform and help others. Some of these empowered patients grow into an ambassador role.

To be really empowered, patients should (generally)* not act on their own, they need other patients, doctors (and/or other healthcare worker) too. For real engagement all have to share knowledge, experience, thoughts and information.

And as an information specialist I have to add, that finding information doesn’t mean a lot, if the information isn’t reliable. Many patients (and alas also doctors) adopt Internet information, without checking the source.
How did the anti-vaccine sentiment become so powerful? Why do so many people turn to ineffective alternative medicine? Dr Google also feeds hypochondria.
Admittedly there are many success stories of patients finding crucial new information via the Internet, that wasn’t provided by their doctor. But good care doesn’t stop there.

So, although we do not need to invent new names, the awareness should grow, that the E-patient doesn’t not stop where dr Google ends, it is not passive, needs the involvement of doctors too and requires the (free) availability of good information on the Internet.

For this we need a ReShape, I agee with Lucien. But the reshape has already begun with patient-advocates like E-patient Dave, Gilles Frydman (@gfry on Twitter) and Sussanah Fox of e-patients.net of  and with the initiatives of doctors like Bas Bloem and Jan Kremer in the Netherlands, who created the award winning initiative MijnZorgNet (MyCareNet).

Active, well-informed, E-patients are central to this Health 2.0 movement, but not the only players.

*dependent on the nature of the disease; in case of prevention or less serious conditions, the patient/person might not need to see a doctor.

Related Posts on this Blog:

  1. The Trouble with Wikipedia as a Source for Medical Information
  2. Web 2.0 and Health Care Reform: Two Dutch Examples (1)
  3. The Web 2.0-EBM Medicine split. [1] Introduction into a short series
  4. The Doctors & the Patient
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4 responses

26 05 2010
Tweets that mention E-Patients & I-Patients? « Laika's MedLibLog -- Topsy.com

[...] This post was mentioned on Twitter by Bertalan Meskó, MD, Laika (Jacqueline), Laika (Jacqueline), Bart Collet, Palmdoc and others. Palmdoc said: RT @Berci: E-Patients & I-Patients? (@laikas shines again!) http://ff.im/-kULXW [...]

26 05 2010
Lodewijk Bos

Please see my blog: http://blog.icmcc.org/2010/05/12/me-patient/ as well as the definition of health 2.0 I published in 2008: http://blog.icmcc.org/2010/05/12/me-patient/

2 06 2010
Health 2.0 News: iPad, I-Patients, Wii and computer viruses « ScienceRoll

[...] E-Patients & I-Patients?: A nice overview about the definition of empowered patients or e-patients. [...]

19 04 2011
#TEDxMaastricht « Laika's MedLibLog

[...] E-Patients and I-Patients (laikaspoetnik.wordpress.com) [...]

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