Meredith Skeels

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.