By Patricia Flatley Brennan.
We repeatedly hear of health professionals discounting patient self-report. Denise Grady's article in the New York Times, In Reporting Systems, Don't Patients Know Best?, brings a new perspective into the conversation. What patients are EXPERT on is their own experience - what is sometimes perplexing to clinicians is that the words and phrases lay people use to describe those experiences may not accurately 'map' to the terms clinicians are familiar with. Indeed, in some cases the experience of patients is just that, their experience, and it may or may not have any direct alignment with the signs and symptoms indicative of the disease process the clinician is considering as they evaluate the 'validity' of the patient experience.
In Project HealthDesign, we understand observations in daily living (ODLs) to be indicators of a person's experience that alert the person to take action (call the clinician, exercise more, adjust their fluid intake, etc.). Across our five Project HealthDesign teams, clinicians, patients and designers are taking a 'deep dive' on these ODLs - figuring out what indicators people attend to, how computerized tools can make the capture and interpretation of them easier, and, importantly, what do these ODLs tell clinicians and their patients about the person's health state. ODLs may align well with clinician-recognized signs and symptoms, or they may serve as companion sentinels to the person to take action. Just because we might not understand them immediately doesn’t mean we should ignore them. We need to use them for what they are: indicators that something is going on related to our health!
