Feature: The Power and Potential of Personal Health Records

    • January 18, 2010

What are Personal Health Records (PHRs)? How are they related to Electronic Medical Records (EMRs) and Electronic Health Records (EHRs)? What is the role for PHRs in the landscape of health information technology (HIT)? What are Observations of Daily Living (ODLs), and how will this new kind of health information lead to healthier decisions and better health outcomes? What do all these acronyms mean for patients, doctors, and caregivers?

The purpose of this Web feature is to provide a new and enriched context for the body of work on personal health records funded by the Pioneer Portfolio and the Robert Wood Johnson Foundation. After five years of funding PHR-related work, the Pioneer Portfolio has acquired a substantial corpus of reports, podcasts, e-primers, and blog posts concerning personal heath records. The Pioneer Portfolio has worked with several organizations in this space, and each product highlighted in this collection represents the hard work and creativity of various grantees over the span of five years. When considered as a whole, however, this collection presents a more powerful and compelling portrait of personal health records than any one free-standing report possibly could.

Specifically, this feature provides a medium to share learning on the part of the Foundation, its grantees, and its staff. So often, accumulated expertise and lessons learned remain locked up in the minds of the project directors and grantees that the Foundation has funded over the years. Through this feature, we—The Pioneer Portfolio—attempt to synthesize the work of our grantees in the area of personal health records. Moreover, we openly share with you our perspectives, insights, and takeaways from this collective body of work, as well as our vision for the future of the field.

Chapters 1 and 2 trace the development of personal health records (PHRs) from static repositories for health information into dynamic and customized platforms for patient empowerment. Personal Health Records 101 draws on some of the earliest work on personal health records (by Pioneer or anyone) and outlines the features and functionalities common to the first personal health records. Project HealthDesign and the Next Generation of Personal Health Records chronicles the evolution of the personal health record into a next-generation tool for patients to better understand and manage their own health.

Observations of Daily Living delves into the potential of Observations of Daily Living (ODLs) to capture the aspects of health that occur between doctor’s office visits. Information on sleep patterns, diet and exercise, pain episodes, and medication adherence are not usually part of patients’ official medical record, but PHRs provide an opportunity—as well as a challenge—to integrate these important aspects of health into the physician-patient interaction.

The Health Information Technology Landscape steps back to examine the health information technology (HIT) landscape as a whole, and the role for personal health records within that infrastructure. Understanding this context is crucial to the future adoption and integration of PHRs into the health care system, as well as meeting the attendant technical challenges. Chapter 4 also probes the technical challenges facing personal health records (PHRs) and electronic health records (EHRs), such as finding a standard way to represent data across health care entities.

Personal Health Records and Health Information Technology--Costs, Policies and the Incentives Driving Adoption completes the discussion about the incentives driving (and hindering) the widespread adoption of health information technology (HIT) and asks how privacy, liability, and reimbursement policies shape the future of PHRs. It addresses how consumers regard issues of privacy, security and control of their health data in an age of smarter PHR systems, and asks how policies and norms must shift as a result of changing technology.

Privacy and Personal Health Records expands upon the analysis presented in Chapter 5, focusing specifically on privacy policy and its implications for the future of personal health records.

Personal Health Records--Business Models, Open Platforms and the Challenges Ahead looks to new entrants to the realm of health and health care, like Google and Microsoft, to uncover the potential of the open source platform for stimulating adoption and innovation around health information technology.

Each chapter is complemented by a set of resources—reports, blogs, podcasts and other media—which together form the basis for that chapter’s observations and arguments. In addition to being listed in the resources section of the page, certain content is referenced and hyperlinked within the chapters themselves. In doing so, our hope is to highlight how these resources speak to each other and to illustrate how this body of work as a whole informs the Pioneer Portfolio’s vision for PHRs. For a detailed summary of each supplementary resource, please see the annotated bibliography for this feature. The set of resources below provide a general introduction to PHRs. You can start here, or read "Chapter 1: Personal Health Records 101" for an introduction to PHRs.

Content disclaimer: This feature primarily draws on the body of work done by grantees of the Robert Wood Johnson Foundation and specifically the Pioneer Portfolio. Where necessary, we cite and comment on seminal work that was not funded by the Foundation. This feature is limited in scope by design, and therefore there are some materials on personal health records (and plenty of resources on health information technology) that are not included here.

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