The Patient Voice: A Biased Or Valuable Source Of Information ?

By caitrionacox in BMJ Blogs.

Casper G. Schoemaker reflects upon a recent interaction which caused him to consider how we should think about the value of patient accounts of illness.

The education department of our academic hospital is proud to be ‘patient-centered’. Consequently, a patient was invited as the first keynote speaker at a retreat for teachers and some students. I found her story impressive and insightful; some listeners were clearly moved. I kindly asked the PhD-student sitting next to me what she thought of the speech.

“I don’t know”, she replied. “I can’t listen to patients. When they start to talk, my ears just stop working. The only thing I can think of is N=1”. She explained that in the clinical epidemiology lectures she had been taught that stories of individual patients are always biased.  “If another patient had been invited, she would have told us a whole different story”. The other biomedical PhD-students nodded: they agreed.

I just didn’t know what to say. In the following weeks, her words resonated in my head. Was she just a callous individual, blaming others for her own lack of empathy? Or was she right, and did we really teach our students not to listen to patients? I decided to examine the clinical epidemiology reader of our department. Overall, it struck me as overly concerned with preventing bias. I could not find any encouragements to listen to patient stories. The authors described case studies as the lowest form of evidence, implicitly assuming they were told by a doctor. A lay person telling her own emotional story was the pinnacle of bias, that went without saying.

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