| Friends, family, and community provide important support and help to patients who face an illness. Unfortunately, keeping a social network informed about a patient's health status and needs takes effort, making it difficult for people who are sick and exhausted from illness. Members of a patient's social network are often eager to help, but can be unsure of what to do; they must balance their desire to help with trying not to bother a sick friend. In this dissertation, I describe research on how people share health information within their existing social networks and present technology to create informed, helpful networks. I used a mixed methods approach of interviews and an online questionnaire to provide a detailed analysis of what health information people share, who they share with, mode of transmission, and why people share personal health information.;My research culminates in the design of new technology that enables patients to create an informed network and catalyzes helping activities within that network. I used participatory design methods with breast cancer patients and survivors to ensure that the design is based on a firm understanding of users' goals, priorities, constraints, and current sharing practices. Together, we designed a technology that allows a patient to keep their social network up to date, solicit help from their network, field offers of help, and collaborate through discussions. The design is motivated by the insight that a more informed social network is better able to provide needed help and support. Advocating that patient-centered technology should allow users to share personal health information with others comes with the responsibility to contribute to the effort to create usable privacy interfaces. I present a method for evaluating the transparency of privacy controls and use this method to identify a transparent icon that can be embedded within interfaces to show how information is being shared.;Embracing the complex picture of how patients manage and share personal health information with others will ultimately improve the technology available to support patients. I contribute a better understanding of current sharing practices and technology to enable patients to create informed, helpful social networks. |
