"Beyond Privacy" ProjectCommunicationsLab NotesLiving between the linesNotes

“Beyond Privacy” Project: The Prologue (on the education that our kids deserve)

Provisional book cover: Title :

This post is about the “Beyond Privacy” Project: LIVING BETWEEN THE LINES information society through our personal information.

As this is an open work-in-progress book drafting project,

please do not hesitate to comment!

Every input is precious to help improve it.

Prologue

Life Lines

 

Let us imagine Sarah, a teenager who muses about how numerous information items link her to others. Shouldn’t we offer ourselves and our kids such an education?

 

My births

My foetal life was a pampered one. My mother closely watched over it. Both she and I enjoyed the support of caring relatives as well as of modern medicine. Thus long before my birth, my mother’s medical records already had stored up about me more than a hundred lines of text. Notes about observations, test results, diagnostic findings, prescriptions and medical procedures. Not to mention the thousands of lines of ultrasound images. Images of me which my Mom proudly displayed on her social networks’ pages. Sites that also displayed hundreds of lines of encouragements and advices from the people she meets there as well as from her obstetrician.

One échography, one relationships network: figure showing that fetus Sarah's echography links her to her mother, and the latter to her doctor and hospital on one side, and through social media, the mother to her family, friends, colleages and contacts

Barely out of the womb, the confirmation of my vital signs resulted in the opening of my very own medical record. I must admit that, for a time, it was identified by the bland first name of… “Baby”. Still, it was through the creation of this file that I finally became a “patient” in my own right, even after months of medical follow up.

My noisy and exhausting delivery was quickly followed by another birth. A more subtle but decisive one: that of a new citizen. It took place by writing of a few lines on a form for vital statistics registration. A seemingly minor gesture. But this act immediately made me the bearer of many legal rights and benefits – and later of obligations – among this society where accidents of history and genetics made me entered life.

And from “Baby”, I officially became “Sarah”.

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CommunicationsExperimentsLab NotesNotes

First Use of Prezi to Animate Pictures of Interpersonal Information Processes (PIP)

I already experimented with Prezi, either to illustrate a concept or to support a public presentation. However, this is my first utilization test of Prezi to animate two complete diagrams describing interpersonal information processes (PIP). Here, it is to explain and compare two different modes of consent to communication of medical information: the ordinary mode and the currently planned one for the health information report of the Dossier Santé Québec electronic patient record project. This animation was produced for a meeting at the Office of the Information and Privacy Commissioner of Ontario, on March 11, 2010.

Click the arrows to move forward or backward or move the cursor into the image itself: this presentation has not been programmed for autoplay.

(more…)

ExperimentsLab NotesNotesReflections

Question: How to Illustrate the Notion of Opting Out?

Opting out is frequently offered in the handling of personal information. It is about the fact that a set of operations will be carried out unless the interested person expresses the desire not to permit it. The most common example is that of merchant who will contact you to offer for other products or services unless you tell him your wish that he does not go ahead. How can we illustrate these mandatory or “by default” operations as well as that possibility that the person can refuse them?

Consent to communication in DSQ – v. March 10 (more…)

ExperimentsLab NotesNotesReflections

How to Illustrate Consent or Lack of Thereof?

The consent or not to some personal information handling is an important issue. How to illustrate? Here are two figures that compare the place of consent (or lack of thereof) in two contexts: the ordinary communication of medical information between health professionals (Figure 1) and an electronic communication, as proposed by the Dossier Santé Québec system (Figure 2).

Ordinary consent to communication of medical information

Communication of medical information through DSQ (more…)

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