By Patricia Flatley Brennan, Director, Project HealthDesign.
Benedict Carey's recent article in the New York Times describes a research project in which 32 families allowed videographers to tape, code, and categorize every waking moment for a week in their lives. Mindful of recent NYT articles on patient self-report and The Data-Driven Life and additional follow-on articles one might wonder, has the NYT gotten the observations of daily living message? Is continuous video recording the ultimate way to monitor ODLs? Or, is this ODLs on steroids?
We recognize that ODLs are an emerging concept and we are just beginning to get our hands and heads around them. We've learned that ODLs are uniquely defined key indicators or cues that lay people pay attention to in a way that helps them better understand what is happening to their health. Over the past few weeks our projects have introduced you to the some of the ODLs our grantee teams are working on - such as the mood of a teen as they drop by a fast food joint with their friends, or the nausea and pain that accompanies a flare-up of Crohn's disease.
What's important here are two things: (1) the cues are personally meaningful; (2) the importance of keeping track of them can go up and down for clinicians. We've begun to believe that conscious awareness of the ODLs by the person is an integral characteristic of ODLs. However, as Nikolai Kirienko pointed out, sometimes the person lacks the will or the strength to actively record these observations. External sensors, like motion detectors, pollen sensors and even videotapes complement person-initiated and controlled observation capture, and may round out the picture of what is happening to the patient and why.So, should videotaping of people's lives be encouraged as a way to capture ODLs? Probably not - at least videotapes don't provide the complete solution. Despite the ease and non-intrusiveness of passive capture approaches, such strategies provide only part of the picture, and may, because they lack the cognitive awareness, be less helpful in the long run because they don't actively engage the person in their own health.
There's no one solution to ODL-watching and we'll need everyone on the journey to help characterize personal health, figure out how to best monitor and share the indicators important to lay people and their clinicians, and re-think what PHRs can do about enhancing life. Stay tuned and share your thoughts.