Major Robert Wood Johnson Foundation Report on PHRs

January 19, 2010

The Robert Wood Johnson Foundation has published an 7 chapter online book about Personal Health Records. The book is a great summary of the current state of PHRs as well as initiatives promoted by Project Health Design. Chapters are:

Chapter 1: Personal Health Records 101
Chapter 2: Project HealthDesign and the Next Generation of Personal Health Records
Chapter 3: Observations of Daily Living
Chapter 4: The Health Information Technology Landscape
Chapter 5: Personal Health Records and Health Information Technology—Costs, Policies and the Incentives Driving Adoption
Chapter 6: Privacy and Personal Health Records
Chapter 7: Personal Health Records—Business Models, Open Platforms and the Challenges Ahead

Worthy of note is chapter 3 on Observations of Daily Living (ODL), the importance of having patients enter their own daily activities and disease experience into a PHR. While the chapter does not specifically mention social networking sites like Organized Wisdom or PatientsLikeMe, the implication is that these type of tools provide value, often unrealized, by most provider organizations. ODLs could also include direct input into a tethered PHR or via home monitoring devices.

Also presented well is the discussion of the Health IT landscape and the emphasis on open platforms. Microsoft HealthVault and Google Health are described as revolutionary innovations. They provide PHRs with open connections to EHRs and devices as well as a portable, web-based record empowering patients to bring their records to any provider.

They conclude with addressing business models and incentives to make PHRs successful. “Open platforms create a wide avenue for innovation in health care” and the need to move past proprietary models is promoted. I might add that existing proprietary EMRs must be able to talk to the open platforms through web services or the CCR standard. There is no excuse for not adapting to these standards to enable the transfer of data into patients’ control.

Looking toward future and the new grant recipients for Project Health Design, the authors conclude: “They will face a number of challenges, including how to capture observations of daily living (ODLs); how to aggregate and analyze those data in a PHR; how to use the findings to inform the clinical encounter; and, ultimately, how to empower patients to understand, influence and improve their health. “

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