User-centered research on breast cancer patient needs and prefferences of an internet-based clinical trial matching system

Background: Internet-based clinical trial matching systems have the potential to streamline the search process for women with breast cancer seeking alternative treatments. A prototype system was developed to leverage the capabilities of a personal health record system for the purpose of identifying clinical trials. Objective: This study examines how breast cancer patients perceive and interact with a preliminary version of an Internet-based clinical trial matching system, while taking into account the demands of diagnosis and treatment decision making. Methods: Breast cancer patients participated in small group discussions and interacted with the prototype website in a two-phase qualitative research process. The first phase explored the experience of breast cancer patients (n=8) with treatment decision making, initial responses to the idea of Internet-based clinical trial matching systems, and reactions to the prototype site. In the second phase, a different set of breast cancer patients (n=7) reviewed revised website content and presentation and participated in a usability test in which they registered on the system and completed a personal health record to set up the matching process. Results: Participants were initially skeptical of the prototype system because it emphasized registration, had a complicated registration process, and asked for complex medical information. Changing content and attending to usability guidelines improved the experience for women in the second phase of the research and enabled the identification of functionality and content issues, such as lack of clear information and directions on how to use the system. Conclusions: This study showed that women felt favorably about the idea of using the Internet to search for clinical trials but that such a system needed to meet their expectations for credibility and privacy and be sensitive to their situation, Developers can meet these expectations by conforming to established usability guidelines and testing improvements with breast cancer patients. Future research is needed to verify these findings and to continue to improve systems of this nature.