I recently asked this question at a webinar about patient-oriented research. It was in response to a comment that patients need training to work with researchers. But musing that collaborations are mutual, I was wondering why it was only the patients who need training. Wouldn’t the mutuality lend itself to training (delivered by the patients) for the researchers too?
My question about training researchers was met with nervous laughter. I don’t know if it was because the question made people uncomfortable or if the audience (of mostly researchers) was laughing at my question. Could I, the mom of a kid with a disability and a former cancer patient with a lowly undergrad degree in English, dare to think I could train someone with a PhD?
I hear about ‘training patients’ a lot. Another version of this is ‘coaching parents.’ This is about stuffing patients and families of all shapes and sizes into a rigid deficit-based model. This model is almost always system and provider-centred.
I’d respectfully suggest that we all need training to understand each other. Patients need information about statistics and analyzing data. Researchers need information to understand a patient’s experience in the health care system. Researchers communicate through data and patients communicate through stories. Researchers need to understand stories and patients need to understand data. Our humanity is where we meet in the middle.