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