Workshop on Personal Health Portfolios: Technology, Usability, and Policy*

Information Law Institute & Media, Culture, and Communication

Friday, February 8, 2013 ★ New York University

 411 Lafayette St., 5th Floor Conference Room

Workshop Description: The Office of the National Coordinator for Health Information Technology has defined the PHR as an “electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual” (2008:19). Introducing the term “portfolio,” we seek to broaden the initial conceptualization and explore parallels with similar initiatives in other social contexts. Questions discussed will include: What architectural, usability, and policy considerations guide optimal and appropriate information flows? What role does the portfolio play in cultivating user involvement and improving health outcomes? Can it accommodate health data from diverse sources, including mobile health applications? Can it assist in tracking and aggregating population-level health data? Who should provide, manage, and access, and under what circumstances? What principles ensure that privacy and security are designed into these systems from the outset? Is the vision of a system built around and managed by individual data subjects even useful, or sustainable in today’s burgeoning HIT ecology?

Panel 1: Technology (10:00-11:30)

Wayne Burleson, University of Massachusetts, Amherst
Deborah Estrin, Cornell Tech, New York City
Carl Gunter, University of Illinois, Urbana-Champaign
Peter Levin, U.S. Department of Veterans Affairs
Arvind Narayanan, Princeton University
–Moderator: Helen Nissenbaum, New York University

Panel 2: Usability (1:00-2:30)

Denise Anthony, Dartmouth College
Bob Evans, Google (representing himself)
Sean Nolan, Microsoft HealthVault
Katie Pine, University of California, Irvine
–Moderator: Heather Patterson, New York University

Panel 3: Policy (3:00-4:30)

J.D. Fugate, Microsoft
Thomas Trojer, University of Innsbruck
Stefaan Verhulst, Markle Foundation
Ann Waldo, Wittie, Letsche & Waldo
Henry Wei, White House and U.S. Department of Veterans Affairs
–Moderator: Andrea Matwyshyn, University of Pennsylvania


* Convened by:

  • Professor Helen Nissenbaum, Dr. Heather Patterson, & Dr. Martin French
  • With support from: The Information Law Institute and The Department of Media, Culture, and Communication, at New York University, and from The Intel Science and Technology Center for Social Computing