Personal Health Records (PHRs)

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A variety of PHRs are demonstrating their value and sustainability on the grass roots level and within large health care organizations. The recent deployment of large-scale interoperable platforms to serve a variety of personal heath applications promises to further enrich the ecosystem of personalized, health-enhancing tools available to patients and the public at large. Attendees of the PHR track will have an opportunity to discuss issues regarding the development, refinement, assessment, and promotion of personal health records with national leaders representing a diverse spectrum of users and organizations.

Learning Objectives:

• Understand important developments in the evolution of the PHR landscape and the interrelated components – personal health applications, personal health data sources, and personal health platforms and infrastructure.
  
• Understand who uses a PHR, their needs, preferences, and tasks and how they can be engaged.
  
• Understand the value of PHRs from the perspective of various stakeholders (consumers, patients, providers, organizations, government) in diverse contexts and settings and areas where future research is needed.
  

(S04) Track Keynote Presentation: Personal Health: From Patient Needs to Personal Health Applications
Thursday, May 29, 2008, 1:30 pm - 3:00 pm

Gunther Eysenbach
Centre for Global eHealth Innovation, Toronto, Canada

Dr. Eysenbach will provide a global perspective on personal health applications (PHAs) and eHealth. As editor of the Journal of Medical Internet Research, “the leading peer-reviewed journal for health and healthcare in the internet age,” Dr. Eysenbach is attuned to the latest international fi ndings regarding the multitude of technologies, applications, interfaces, and users in the international field of eHealth. He will discuss the “state of the art” practices in developing PHAs that suit the needs of patients and help them live healthier lives. He will also discuss current trends in computing (text messaging, pervasive/ambient computing, etc.) and their likely—or unlikely—effects on PHAs and eHealth.


(S08) Panel: Platforms and Personal Health Applications: What is the Tipping Point for Interoperability?
Thursday, May 29, 2008, 3:30 pm - 5:00 pm

Panel to include:
Colin Evans
Dossia, Portland, OR
Anna-Lisa Silvestre
Kaiser Permanente, Oakland, CA
Roni F. Zeiger
Google, Mountain View, CA

An interoperable PHR platform in common use could enable a thriving market for a variety of innovative personal health applications, and could serve the needs of patients who get care from a variety of settings. But absent these innovative applications, there is little incentive for organizations to put resources into sharing data with an independent platform.
In this session, panelists will consider what the “ecosystem” of personal health applications would need to look like for health care organizations to justify investment in exporting data to PHR platforms. They will consider questions including: What sort of personal health applications are we likely to see?
Will they resemble current applications like RealAge? Does this vision suggest a compelling business case for sharing data? What is the “low hanging fruit” in interoperability? What data elements would be easiest to share? Most benefi cial? What needs to be encoded/computable? What could provide initial value as unencoded text or images?


(S12) Presentations: Engaging PHR Users in Theory and Practice
Friday, May 30, 2008, 8:30 am - 10:00 am

Many uses of PHRs have been proposed. But what do users of PHRs really want and need? What factors will users find engaging after the “wow” factor has worn off? Panelists will discuss what consumers say they want in surveys, and how they have been engaged in deployment of PHRs for a variety of users and purposes.

What Does the Consumer Want? Emerging Approaches to PHR Design, Development, and Use
Prashila Dullabh
National Opinion Research Center Bethesda, MD

PatientsLikeMe: Empowering a Community of Patients with Progessive Neurologic Disorders
Benjamin Heywood
PatientsLikeMe, Cambridge, MA

Report on a PHR Deployment in the Asia Pacifi c Region
Anand Inumpudi
Oracle Corporation, Redwood Shores, CA

A Healthcare Infrastructure for Population Monitoring of Everyday Life
Bruce R. Schatz
University of Illinois at Urbana-Champaign, Urbana, IL


(S16) Presentations: The Social Value of PHRs
Friday, May 30, 2008, 10:30 am - 12:00 pm

Do PHRs have a social value that would justify greater investment in resources to support them? In this session, speakers will discuss the value proposition of PHRs for particular communities and for society at-large.

Personal Health Records in Disability Communities
Thomas A. Horan
Claremont Graduate University, Claremont, CA
Health Record Banks: A Feasible and Sustainable Approach to Community RHIOs using PHRs
William A. Yasnoff
NHII Advisors and Johns Hopkins University, Baltimore, MD
Quantifying the Benefi ts of PHR Systems
David Kaelber
Center for Information Technology Leadership (CITL), Boston, MA
Key Ethical and Social Issues in a Future of Widespread PHR Adoption
Kenneth W. Goodman
University of Miami Bioethics Program, Miami, FL


(S20) Panel: Addressing the Challenges of Using Personal Health Records in the Primary Care Setting
Friday, May 30, 2008, 1:30 pm - 3:00 pm

Primary care and personal health records are important in improving the quality and patient centeredness of care by providing a life long summary of care by all providers along with data gathered at home between encounters. A PHR is an essential step to creating an effective medical home, however, the informatics needs of the primary care setting are challenging, especially where time and technology is limited, special coding and vocabulary requirements exist, and the variability of “users” create critical challenges to integrate a PHR into daily practice. This panel will explore some of these challenges and discuss potential uses of PHR data in the primary care setting, Electronic PHRs in Primary Care, Governance and Policy for PHRs, Informatics Tools to Support Self-Management in a PHR, A Proposed Framework for PHRs, and Using PDF for Healthcare to Visualize Patient Provided PHRs in the Primary Care Setting.

Introduction provided by:
Stephen J. Morgan
Partners HealthCare, Boston, MA

Panel to include
Neil Cowles
Tolven Inc., San Francisco, CA
Shane R. Reti
Harvard Medical School, Boston, MA
Melinda Jenkins
New York City Department of Health and Mental Hygiene, New York, NY
David W. Bates
Brigham and Women’s Hospital, Boston, MA Chairman, American Medical Informatics Association
Alan E. Zuckerman
Georgetown University Medical Center, Washington, DC


(S24) Personal Health Record Track Analysis and Discussion
Saturday, May 31, 2008, 8:30 am - 10:00 am

Panel to include:
Stephen E. Ross
University of Colorado Denver Division of General Internal Medicine, Aurora, CO
Jonathan S. Wald
Partners HealthCare, Boston, MA

What are the key issues that informaticians need to address when it comes to personal health records? What key areas should funders focus on when scoping PHR projects? Scientific Program Committee Track Chairs Stephen Ross and Jonathan Wald will present a synthesis of the lessons from the PHR track and engage the audience in a discussion pertaining to the next steps and recommendations to AMIA.


Posters
A complete list of posters by track is available here.
2008 AMIA Spring Congress posters will provide an ideal opportunity for conference attendees to learn about preliminary research results or results of small scale studies, illustrating and discussing innovative systems and services, describing experimental and in-practice projects and programs, reporting experiences with educational programs, and other dimensions of medical informatics.