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
Patient Engagement is difficult to write about because it’s poorly defined and usually discussed in broad strokes. This post attempts to identify separate themes so that I might have a way to clarify and focus my thinking, moving forward. Continue Reading
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
