The Robert Wood Johnson-funded Project HealthDesign primer on Personal Health Records (PHRs) describes the new PHR both as a repository for information related to one's health care and a way to record observations about daily living (ODLs). We're meant to track these observations the amount and quality of our sleep; what we ate; our blood pressure; our symptoms in the belief that such information will shape daily decisions and allow for a more productive discussion with (our) clinician.
One piece of good news: The initiative is taking an approach that Apple, for example, has perfected but which seems only now to be dawning on health technology developers: asking potential users what they need help with and testing new approaches with them. This plea is not new, but is heeded only sporadically.
More good news: People are telling developers how little interest they have in monitoring their health-related activities.' For example, investigators hoped that individuals with diabetes would be interested in taking a picture of everything they ate and e-mailing it to their doctor. "People just wouldn't do it. They felt it was invasive or that it stigmatized them," reported principal investigator, James Ralston, MD, PhD.
The lack of enthusiasm on the part of participants didn't discourage the scientists, however. Rather, it merely convinced them that they hadn't found the right hammer with which to pound the nail of dietary monitoring for people with diabetes.
And the investigators may be right. While new technologies now make it possible to track many aspects of our behavior and physiological processes, our lack of interest in using those technologies may be due to their intrusiveness or clumsiness. Or maybe it's just a matter of time maybe we are late adopters of some types of technologies. A recent report by the California HealthCare Foundation found that the biggest users of personal health records right now are college-educated men under the age of 45 not the average person in their late 50s with diabetes, hypertension or sleep problems.
I'm bemused, though, by this assumption among some that just because we can monitor various aspect of our health means that we eventually will.
The Data-Driven Self, a recent New York Times article, discussed this assumption in depth and concluded that Self-tracking is not really a tool of optimization but of discovery. As someone with a number of chronic conditions who has talked with hundreds of others with the same, I can say that our appetite for discovery about our diseases and symptoms waxes and wanes: the demands of our lives our work, our worries, our enthusiasms and our responsibilities often make it difficult for us to do the basic tasks of caring for ourselves, much less track them with the aim of discovery.