Personal Health Information Management and Design of Consumer Health IT

The purpose of this project was to establish a foundation and propose an action agenda for the integration of patients' personal health information management (PHIM) into the design of consumer health information technology (IT). These aims were achieved through a 2-day workshop convened by the Agency for Healthcare Research and Quality in July 2009, titled "Building Bridges: Consumer Needs and the Design of Health Information Technology," and the subsequent final report, titled "Managing Personal Health Information: An Action Agenda." The report presents key recommendations and the action agenda developed during the workshop.

The main objectives of the project were to:

• Assess and synthesize existing research and evidence regarding patients' PHIM practices and their linkages to effective development and use of consumer health IT.  
• Conduct secondary analysis of the Medical Expenditure Panel Survey (MEPS) data to better understand the degree to which the household received various medical services in the past year are associated with the manner in which the household kept records of those medical services.
• Identify and convene a multi-disciplinary expert workshop to establish a research agenda around PHIM and health IT.
• Synthesize the information gained into a final report to include a preliminary framework for studying this topic and recommendations for ongoing research, implementation, and policy work in this field.

The workshop brought together leaders from multiple disciplines, including health sciences, health informatics, information science, consumer health IT, and human factors research, with specific expertise in the fields of PHIM and health IT. The main themes that emerged from the workshop included the need to define PHIM and issues around design.  Participants also identified several steps that could be taken to promote innovation in consumer health IT, including building a knowledge base about consumers' PHIM needs and practices and related design principles, leveraging the support of interdisciplinary efforts to drive innovation, and building a more robust health IT infrastructure to ensure access to all health care consumers that can support the dissemination of new solutions across different platforms.

The data analysis from the MEPS indicated that many factors seem to influence an individual's choice of information recall methods, including demographic and socioeconomic characteristics of the individual or family, the volume of health information managed, and the type of medical event such as dental or home health care.

Finally, the workshop participants developed a research agenda proposing recommendations pertaining to three main areas: understanding user needs and context, improving design of consumer health IT tools, and evaluation research.  The detail behind these recommendations can be found in the final report.