Perceptions of Electronic Personal Health Records and the Connection to Self-Care: Considerations for Design and Implementation Within a Multicultural Population

Abstract

Health consumers who are motivated and engaged in self-care are more effective users of health-care resources and are more likely to experience better health outcomes. For this to occur, health consumers require a mechanism to track their health record in order to empower them as effective and active participants in managing their health. To understand the impact of a personal health record (PHR) on one’s capacity to enable effective self-care, this study invited participants of a public health education forum to share their perspectives on PHRs, their personal health status, and their ability to make informed choices about their self-care. Uniquely, the public health education forum was held in Chinese (both Mandarin and Cantonese) and adapted to be culturally relevant for Chinese families living in British Columbia (BC). Forums were part of a larger educational campaign and focused on culturally relevant chronic disease management, providing participants with general education on the prevention and management of cardiovascular disease. This study used mixed methods, incorporating data collection by means of surveys, focus groups, and interviews. Surveys were distributed to participants upon arrival at a public health education forum hosted by the University of British Columbia’s (UBC) Faculty of Medicine eHealth Strategy Office. While respondents recognized the benefits of tracking their own health record, many had not yet made use of PHRs, and for those who did track their health, most used paper records. Analysis of data revealed that most of the participants were ready to learn how to set up their own electronic personal health record (ePHR), recognized the potential advantages and challenges associated with using an ePHR, and wanted to proceed with using an ePHR toward helping them in their own health management

Key Messages

• These findings indicate that individuals are motivated for self-care, and creating a personal health record is a very effective approach to start individuals on their self-management journey.

• There is a current window of opportunity to use ePHR as a means of fostering self-care.

• Community input is needed every step of the way to ensure cultural relevance as well as usability on the technology front.

• Patient-centered care is analogous to user-centered design in technology; evaluation employing a participatory approach not only informs program improvement but also is another vital channel for engagement.