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

Project Overview

The overall goals of this contract were to characterize the methods that individuals use to manage their health information, establish an action agenda about how personal health information management (PHIM) practices can be supported by health IT, and propose recommendations for moving the agenda forward. The research informed the design of effective consumer health IT systems by identifying key design principles that are appropriate for different types of health information and for different types of consumers.

This project included 3 phases:

  • A literature and evidence review relating to consumers’ personal information management (PIM) and PHIM needs and goals, practices used for PIM and PHIM, tools and technologies available to date, and significant gaps in current understanding of PHIM
  • An analysis of the Medical Expenditure Panel Survey (MEPS) to better understand individuals’ health management techniques (e.g., relying on memory, recording information on a calendar or in a checkbook, or referring to consult documentation) as well as 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 that are 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

Core Activities

Stakeholder Engagement and Coordination of Advisory Committees and Technical Expert Panels; Complex Survey Data Analysis and Modeling; Literature Reviews and Environmental Scans; Policy Analysis and Assessment; Report Development and Presentation


Three reports were developed for this project. These include:

  • “Personal Health Information and the Design of Consumer Health Information Technology: Background Report.” (June 2009)
  • “Personal Health Information and the Design of Consumer Health Information Technology: Secondary Analysis of Data From the Medical Expenditure Panel Survey.” (July 2009)
  • “Managing Personal Health Information: An Action Agenda.” (March 2010)

The reports are available at

The project was featured in the Agency for Healthcare Research and Quality (AHRQ) Spotlight report entitled “Success Stories From the AHRQ Funded Health IT Portfolio (2009).” (November 2010)