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You Want Me to Discover WHAT on My Personal Health Record?


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.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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Health Information Technology   Jessie Gruman   Communicate with your Doctors   Organize your Health Care   Participate in your Treatment   Inside Healthcare  

Comments on this post
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Steve Downs says
August 6, 2010 at 10:47 AM


I think you raise some really good questions about the â??observations of daily livingâ?? or â??quantified selfâ?? approach. The goal of our work in Project HealthDesign to explore the potential of using data that people can enter themselves or have monitored more passively (through sensors, for example) to provide feedback to those people and to enable more informed care. The key word, or course, is â??explore.â?? Iâ??m with you in challenging the assumption that just because we can do something, we will. And I think your point that our appetite for discovery about our conditions waxes and wanes is right on. For more on that, Iâ??d encourage you to read a couple of posts by Nikolai Kirienko, one of our grantees (and a Crohnâ??s patient) on the Project HealthDesign blog: and

Clay Shirky has offered this simple equation: behavior is motivation filtered through opportunity. With smartphones and sensors, the nature of opportunity is changing; whether behavior will change as a result is an empirical question. If I had to guess, the answer will be â??it dependsâ?? -- on the person, the conditions theyâ??re dealing with, on the time, on the ease of the behavior, possibly on the relationship with a clinician, and other factors. I look forward to seeing the final results of these projects, but in addition, weâ??ve pushing our researchers to share their insights on the projectâ??s blog, which theyâ??re doing regularly.

Gary Wolf says
August 10, 2010 at 6:43 PM

Thanks Jessie for this post. I think you are writing about one of the most interesting and challenging themes here: what motivates us to know more about ourselves; how does this motivation ebb and flow; what kinds of systems are most useful in the context of the complexities of our goals and behavior. In looking at hundreds of attempts to create useful self-tracking systems, I've observed that simple, flexible and "under-featured" systems seem especially friendly. Of course the trade-off is that these "slight" tools produce "slight" data: there are many gaps. So I wonder if part of the solution is going to come from ways to find the meaning in slight data. Whether or not this is the case, I think you are absolutely right to point out that the fantasy of everybody capturing everything about what they do is completely unrealistic - and probably unhelpful as well. There are limits to what we can care about, and trade-offs of attention that we all make.