Sharing is caring, but not error free: transparency of granular controls for sharing personal health information in social networks.

When patients share personal health information with family and friends, their social networks become better equipped to help them through serious health situations. Thus, patients need tools that enable granular control over what personal health information is shared and with whom within social networks. Yet, we know little about how well such tools support patients' complex sharing needs. We report on a lab study in which we examined the transparency of sharing interfaces that display an overview and details of information sharing with network connections in an internet-based personal health information management tool called HealthWeaver. Although participants found the interfaces easy to use and were highly confident in their interpretation of the sharing controls, several participants made errors in determining what information was shared with whom. Our findings point to the critical importance of future work that examines design of usable interfaces that offer transparent granularity in support of patients' complex information sharing practices.

Bringing the Field into Focus: User-centered Design of a Patient Expertise Locator.

Managing personal aspects of health is challenging for many patients, particularly those facing a serious condition such as cancer. Finding experienced patients, who can share their knowledge from managing a similar health situation, is of tremendous value. Users of health-related social software form a large base of such knowledge, yet these tools often lack features needed to locate peers with expertise. Informed directly by our field work with breast cancer patients, we designed a patient expertise locator for users of online health communities. Using feedback from two focus groups with breast cancer survivors, we took our design through two iterations. Focus groups concluded that expertise locating features proved useful for extending social software. They guided design enhancements by suggesting granular user control through (1) multiple mechanisms to identify expertise, (2) detailed user profiles to select expertise, and (3) varied collaboration levels. Our user-centered approach links field work to design through close collaboration with patients. By illustrating trade-offs made when sharing sensitive health information, our findings inform the incorporation of expertise locating features into social software for patients.