Because only patient’s can express the reality of their health status, the real benefit of patient-centricity in health and pharmaceutical research may well be learning about the depth of what patient’s experience. Hard to disagree with the obviousness this statement, isn’t it? So why do health researchers continue to accept surrogate answers from patient’s rather than their actual experience? Confused? Believe patients are already accurately reporting the true experience of their health? Read on.
Enabling a deeper meaning of patient-centricity begins with resolving a dreadful semantic error. The words concept and percept are words similar enough to be easily mistaken as synonyms for one another – though they are not. Our error involves mistakenly exchange the “thing itself,” the sense-perception (percept) that’s the origin of the distress, for the concept (i.e., the word pain”) that attempts to quantify it for the sake of analysis and communication.
Pain itself is not a concept and we researchers need to stop treating it as if it is. Sure, the word “pain” word is a concept. However, the word is meant to express a felt but completely unutterable sensory-perceptual experience. Moreover, the more global term “quality of life” is not a concept either. True, it can be conceptualized through a variety of ad-hoc criteria but, again, they are just trying to express the totality of one’s (unutterable) sensory-perceptual experience(s).
Health researchers may argue that conceptualizations, likely in the form of operational definitions, are required for the purposes of quantification and analysis. However, this is not fully true. For example, the extensive behavioral economics research literature has made many of its points distinguishing between what research participants conceive and perceive. The results have been surprising enough to impress the 2002 Nobel Prize committee.
The solution for obtaining less biased and variable experiences of patients simply involves not asking them to go to thought or memory for answers but, in Malcolm Gladwell’s words (author of the NY Times best seller “Blink”), by “thinking without thinking.” Many informal questionnaires already use this tactic. The “experience sampling” (ESM) and day-reconstruction” (DRM) methods have been specifically designed to for this task. The goal here is to ask for conceptual responses when we want them but to ensure we ask for percepts when we want percepts. We already have the tools. ESM and DRM can be easily implemented through smart phones, tablets and similar devices. Researchers just need to understand there are important, significant differences in the responses obtained from when patients offer either their perceptual or conceptual view. As I have previously suggested, keys to unlocking the mysteries of “response shift” and the effect of placebos may be hidden within.
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Copyright – Steven Pashko, PhD (2017).