Project HealthDesign and Patient-generated Data

Jun 27, 2012, 1:38 PM, Posted by Libby Dowdall

Project HealthDesign National Program Director Patricia Flatley Brennan, R.N., Ph.D., shares how Project HealthDesign views patient-generated data.

Project HealthDesign is a national program of the Robert Wood Johnson Foundation's Pioneer Portfolio. This post originally appeared on the Project HealthDesign blog on June 26, 2012.

Throughout Project HealthDesign’s history, our grantee teams have worked closely with patients in order to explore the potential of personal health records (PHRs) and personal health data. As our first nine teams worked on their projects, they listened closely to patients and began hearing patients describe their health in idiosyncratic ways. Their work led to the recognition of observations of daily living (ODLs) — information about an individual’s life that is both patient-defined and patient-generated.

Project HealthDesign's five most recent grantee teams have carried this vision forward by designing five different technical systems that allow patients to track their ODL data. In these projects, patient participants have tracked a variety of ODLs, from daily activity and stress levels to socializing and moods.

But ODLs are just one type of patient-generated data. Other types include traditional patient-reported information about signs and symptoms (e.g., blood pressure, blood glucose), sensor data, patient preference data, and patient-reported quality assessment data.

We’ve been excited to see interest in patient-generated data grow throughout the course of the program. This month, Patricia Flatley Brennan, Project HealthDesign national program director, testified before the HIT Policy Committee’s Meaningful Use and Quality Measures Workgroups and the HIT Standards Committee’s Consumer Engagement Power Team at their Patient-generated Data Hearing. (Listen to an audio recording of the hearing.)

“Patient-defined, patient-generated data can be incredibly important in helping to understand the care process of individuals,” said Dr. Brennan. Watch the video above to learn more about Project HealthDesign’s outlook on patient-generated data.

This commentary originally appeared on the RWJF Pioneering Ideas blog.