Jennifer Johannesen
MSc Bioethics – author of No Ordinary Boy

          

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Essays and Lectures

Longer form pieces. Theories, commentary, criticism, submissions to publications.

5

The time I didn’t get published in the BMJ

Posted on January 21, 2018 by Jennifer

The established process for determining legitimacy—peer review followed by opaque machinations of editorial discretion—showed that (my) patient experience and analysis was simply not good enough, not legitimate, and in fact should be more appropriately assigned to the patient ghetto called “Opinion.” Continue Reading →

Essays and Lectures
30

Exploring the purpose and meaning of patient engagement in pediatric neurodisability research

Posted on November 8, 2017 by Jennifer

“It surprises me deeply that there is no oversight governing the involvement of patients and families in advisory roles in research, when the protection afforded them as research subjects is paramount.” Continue Reading →

Bioethics 101, Essays and Lectures
9

Two-way street? A critical look at patient and family engagement

Posted on October 29, 2017 by Jennifer

If healthcare really cared, we would be much further along by now.  Why are we still talking about what ‘meaningful’ looks like? Why are patient experts still not paid for their expertise? Why have we not developed a body of research to quantify the value of patient engagement? Continue Reading →

Bioethics 101, Essays and Lectures
10

Reflections on what I don’t have to think about anymore

Posted on September 30, 2017 by Jennifer

I had brunch with Lisa the other day. We hadn’t met in person before but we’d shared not a few laughs and commiserations online. Lisa is a fellow ‘disability mom’ – shorthand I use around the house when Carsten asks,… Continue Reading →

Day to Day, Essays and Lectures
0

We need more critical thinking in clinical bioethics if patient autonomy is what we seek

Posted on January 7, 2017 by Jennifer
person looking into the sun

What is clinical bioethics? In my graduate bioethics program, we considered a range of healthcare topics in the context of our society’s ever-evolving moral and technological landscape – topics such as autonomy and consent, justice, equity, the allocation of resources, pandemics,… Continue Reading →

Bioethics 101, Essays and Lectures, New Ideas
4

What could be better than patient-centred care? Here are a few examples…

Posted on October 24, 2016 by Jennifer

A patient’s reporting of symptoms or telling of their story to a physician, however compassionate that physician may be, is not the same thing as the patient’s full and valued participation in not only identifying and framing their own health issues, but also problem-solving and goal-setting. Continue Reading →

Bioethics 101, Essays and Lectures, New Ideas
0

Just Expectations: Should family caregivers be financially compensated for their work?

Posted on September 10, 2016 by Jennifer

This essay (lightly edited) was submitted as an assignment for my Medicine and Social Justice class, taught by Rosamond Rhodes, as part of the MSc Bioethics degree requirements for Clarkson University/Icahn School of Medicine at Mount Sinai (NYC). The assignment… Continue Reading →

Essays and Lectures
2

Why Bill C-14 must include the ‘reasonably foreseeable death’ clause

Posted on June 17, 2016 by Jennifer

I was asked to speak in a national forum to oppose proposed Senate amendments to Bill C-14, which outlines legislation for Medical Aid In Dying (MAID) in Canada. I presented the text below as one of nine speakers on the panel,… Continue Reading →

Essays and Lectures, Goings On
1

Fake work widens the class gap

Posted on June 15, 2016 by Jennifer

In my last post about Patient and Family-Centred Care, I made a passing reference to ‘fake work’ – a term I use to describe the administrative busywork required by parents and families in order to access and maintain services. I’ve… Continue Reading →

Essays and Lectures, New Ideas
19

A critical look at Patient and Family-Centred Care

Posted on May 19, 2016 by Jennifer

This post contains the text for my presentation as the 9th Annual Sue MacRae Lecturer, at the Joint Centre for Bioethics in May 2016. Continue Reading →

Essays and Lectures

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