"Collecting observations of daily life may be the most important features of a personal health record", according to the Robert Wood Johnson Foundation.

The RWJF has released a report on the initial phase of its Project HealthDesign, a $10 million national program to develop interoperable personal health record systems that draw on clinical records and relevant health data generated in the course of one's daily life.

In the first phase of the project, nine multidisciplinary teams worked over 18 months to design a user-centered PHR application that operates on a common technology platform.

The teams collected and shared so-called Observations of Daily Living (ODL) in patients, including sleep, diet, exercise, mood and adherence to medication regimens, using a variety of technologies, including computers, PDAs and cell phones.

"One of the key outcomes of this project was an increasing focus on collecting data that are not typically part of one's medical record but rather come from the flow of everyday life. In order to provide people with the action-able feedback they sought, PHR applications needed to collect these observations of daily living," said Stephen Downs, assistant vice president of health for RWJF, in the report.

According to the study, patients not only wanted to collect ODLs, but researchers found this information is needed to give people the feedback they require to make everyday health decisions, create a more meaningful portrait of their health and facilitate more productive conversations with clinicians.

Project HealthDesign and experts from the University of Miami Bioethics Program worked to identify and address the most pressing ethical, legal and social issues associated with PHRs. Their research revealed that although patients do care about their privacy, their main concern is being able to access and use health information. 

Teams will be selected for the next phase of Project HealthDesign in late 2009 and will work closely with patients and providers to assess and test the potential of ODLs to better manage chronic illnesses.