Informing Consumer Health Information Technology Design: How Patients Use Social Networking Sites

As health care shifts to home- and community-based settings, patients are increasingly assuming responsibility for and engaging in self care and self management. Multiple forms of consumer health information technology (IT)–-electronic technologies used to support lay people with self care and self management–-are being developed. However, health IT is often developed without an understanding of how health management tasks are performed by the intended users. This results in technologies that are not aligned with users’ needs and preferences; increase physical and psychological burden; and decrease users’ ability to use the technology, all of which increase the potential for unintended consequences. Therefore, it is essential to have an in-depth understanding of patients’ context and reality when designing consumer health IT.

The objective of this study was to develop patient-centered design guidance for consumer health IT that supports health information communication with members of patients’ social networks (e.g., family members, friends, online acquaintances) based on an understanding of how patients’ use Facebook, a popular online social networking site, for health communication.

The specific aims of the project were as follows:

• Generate design guidance for consumer health IT based on an explanation of the ways in which type 2 diabetes patients use Facebook to support health information communication with members of their social network. 
• Generate design guidance for unique segments of the user population based on an understanding of how type 2 diabetes patients who use Facebook cluster into different patterns or styles of health information communication with members of their social network. 

This study used a sequential, three-phase, mixed-methods approach to assess and develop design guidance for consumer health IT. In the first phase, patient interviews were conducted. Patients were asked to describe their social networks and how they used Facebook to understand to whom and why health information is communicated, what health information is communicated, and how it is communicated. Findings from the first phase informed the development of a survey that was piloted in a diverse group of patients with type 2 diabetes. The survey included questions on (1) general Facebook use, (2) health information communication on Facebook, (3) health information communication off Facebook, (4) hypothetical health information communication scenarios, and (5) issues around privacy. In the final phase, 700 participants completed the survey.

This study showed that there is a range of how people communicate with their social network, how this information is communicated, the types of health information communicated, and the rationales for the communication.