Personal Health Information Management and the Design of Consumer Health Information Technology

Project Overview

This project characterized the methods individuals use to manage their health information, establish an action agenda for how personal health information management (PHIM) practices can be supported by health information technology (IT), and proposed recommendations for moving the agenda forward. The research informed the design of effective consumer health IT systems by identifying design principles appropriate for different types of health information and different types of consumers.

The project had three phases:

  • Literature and evidence review related to consumers’ personal information management and PHIM needs and goals, practices used, tools and technologies available to date, and significant gaps in current understanding of PHIM
  • An analysis of the Medical Expenditure Panel Survey to better understand individuals’ health management techniques (e.g., relying on memory, recording information on a calendar or in a checkbook, referring to consult documentation) and some influencing factors such as demographics, socioeconomic characteristics, and volume of health information
  • A multidisciplinary expert workshop to facilitate the design of health IT systems based on a solid understanding of individuals’ and families’ health information management practices, resulting in recommendations for ongoing research, industry, and policy work in this field


Report, Personal Health Information and Design of Consumer Health IT (2009), available at

Report, Personal Health Information and the Design of Consumer Health Information Technology: Secondary Analysis of Data From the Medical Expenditure Panel Survey (2009)

Report, Managing Personal Health Information: An Action Agenda (2010)

Project was featured in the Agency for Healthcare Research and Quality’s Spotlight report, Success Stories From the AHRQ Funded Health IT Portfolio (2010)