Tag: patient partners in medical research

#PatientsIncluded “Lite”: sort of, maybe, but not really

~ Carolyn Thomas ~ 8 Comments

by Carolyn Thomas    ♥   @HeartSisters

It’s fashionable these days for medical conference organizers, journal editors and researchers to boast about how “patient-focused” they are whenever they seek perspectives shared by patients with lived experience. But does boasting make it so?

Some of this patient focus has seemed a bit tepid to me. It’s as if they’re saying they want the patient voice – sort of, maybe, but not really. Here’s what I mean by that:  Continue reading “#PatientsIncluded “Lite”: sort of, maybe, but not really” →

Why patients don’t have admin assistants

~ Carolyn Thomas ~ 17 Comments

                   Moments from the full, rich life of patient partner Lelainia Lloyd *

by Carolyn Thomas   ♥  @HeartSisters

Patients can sometimes be sickly people in bed, wearing embarrassingly undignified bum-baring hospital gowns.

Patients can also be experts in the lived experience of their own diagnoses,  who contribute to medical research and education teams as partners in meaningful academic projects.

If you’re surprised by that last description, you’ll be even more surprised by all the things that many patient partners can do in life (besides laying around being sickly).       .        . Continue reading “Why patients don’t have admin assistants” →