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.

Catalyzing Social Support for Breast Cancer Patients.

Social support is a critical, yet underutilized resource when undergoing cancer care. Underutilization occurs in two conditions: (a) when patients fail to seek out information, material assistance, and emotional support from family and friends or (b) when family and friends fail to meet the individualized needs and preferences of patients. Social networks are most effective when kept up to date on the patient's status, yet updating everyone takes effort that patients cannot always put in. To improve this situation, we describe the results of our participatory design activities with breast cancer patients. During this process, we uncovered the information a social network needs to stay informed as well as a host of barriers to social support that technology could help break down. Our resulting prototype, built using Facebook Connect, includes explicit features to reduce these barriers and thus, promote the healthy outcomes associated with strong social support.

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.

Participatory design with health consumers.

Participatory design methods can help create usable and useful systems by involving users directly in the design process. Traditional participatory design approaches have been adapted to work in health contexts and we present practical lessons we learned while designing with health consumers. These lessons are intended to be practical suggestions for system designers and researchers who want to create better technology by working as partners with health consumers during the design process.

CARE+ user study: usability and attitudes towards a tablet pc computer counseling tool for HIV+ men and women.

CARE+ is a tablet PC-based computer counseling tool designed to support medication adherence and secondary HIV prevention for people living with HIV. Thirty HIV+ men and women participated in our user study to assess usability and attitudes towards CARE+. We observed them using CARE+ for the first time and conducted a semi-structured interview afterwards. Our findings suggest computer counseling may reduce social bias and encourage participants to answer questions honestly. Participants felt that discussing sensitive subjects with a computer instead of a person reduced feelings of embarrassment and being judged, and promoted privacy. Results also confirm that potential users think computers can provide helpful counseling, and that many also want human counseling interaction. Our study also revealed that tablet PC-based applications are usable by our population of mixed experience computer users. Computer counseling holds great potential for providing assessment and health promotion to individuals with chronic conditions such as HIV.

Personal health information management: consumers' perspectives.

Personal health information management (PHIM) refers to activities that support consumers' access, integration, organization, and use of their personal health information. We investigated PHIM in the health consumer population using a focus group and participatory design. In collaboration with health consumers, we identified PHIM activities and explored the design of new supportive technology. Our findings describe prominent PHIM activities such as monitoring and assessing health, as well as health-related decision making, planning, and action. We describe design principles our participants used during the participatory design of a PHIM tool. These include individual control, sharing, integration, security and flexibility. These findings provide new insights into emerging ideas in consumer health informatics research and technology design. Understanding health consumers' PHIM needs is an important step in creating technology to support these needs.