What a year. Here’s an update on random things: Today is Owen’s birthday – he would have been 22. If he’d survived COVID-19. I see how fraught these times are for families with school-aged children. Double – no, triple –… Continue Reading
Transcript of my talk delivered at the BC Support Unit’s 2019 conference, Putting Patients First. Vancouver, November 20 2019. Video recording courtesy of BC Support Unit. Engaging patients in research: it’s what we call a no-brainer, right? Meaning, it’s something… Continue Reading
It’s Owen’s 21st birthday this weekend and I’ve been thinking about ways to acknowledge the day. I want to do something special this year. So, I’ve decided to make No Ordinary Boy free as a PDF, indefinitely. You are welcome… Continue Reading
I contributed a chapter to ICF: A Hands-on Approach for Clinicians and Families (available for purchase in Canada here), a practical guide published by Mac Keith Press, edited by Olaf Kraus de Camargo, Liane Simon, Gabriel M Ronen, and Peter L Rosenbaum. Continue Reading
I wrote a short piece for the inaugural issue of Brainstorm Magazine/Remue-méninges! This publication is produced by The Pragmatic Health Ethics Research Unit (formerly Neuroethics Research Unit), an interdisciplinary research group based at the Montréal Clinical Research Institute (IRCM). I… Continue Reading
Healthcare – especially public healthcare – is optimized for risk management. This will always be true despite talk of ‘personalized medicine’. It perpetuates its own truths and pre-approves acceptable choices for patients. Our experts and clinicians are trained to operate the system as it is, not to construct it on the fly according to each patient’s needs. Continue Reading
I was commissioned by the Patient Partner Working Group of the Ontario SPOR Support Unit (OSSU) to write a paper exploring patient views on ladders of engagement in the context of patient engagement in research. I’m excited to share the… Continue Reading
As enthusiasm for PPI in health research increases, the tensions and conflicts experienced by both patients and researchers also become amplified. In this keynote Jennifer examines some of PPI’s problems by considering fundamental questions such as what is happening, why is it happening, and who is benefiting? Continue Reading
I was a co-presenter (with Olaf Kraus de Camargo, Liane Simon, and Gabriel Ronen) at the European Academy of Childhood Disability Conference in Tbilisi, Georgia last week on “ICF in Clinical Practice” – I submitted my part by video and am sharing it here. Continue Reading
Patient engagement is a vision of patients as empowered, valued participants and institutions as eager learners, prepared to listen and act. Whether those beliefs are rooted in something real hardly matters. Continue Reading
