Abstract :
Objectives: The Patient Education Resource Center at the University of Michigan Comprehensive Cancer Center conducts mediated searches for patients and families seeking information on complex medical issues, state-of-the-art treatments, and rare cancers. The current study examined user satisfaction and the impact of information provided to this user population. Methods: This paper presents the results of 566 user evaluation forms collected between July 2000 and June 2006 (1,532 forms distributed; 37% response rate). Users provided both quantitative and qualitative feedback, which was analyzed and classified into recurrent themes. Results: The majority of users reported they were very satisfied with the information provided (n = 472, 83%). Over half of users (n = 335, 60%) shared or planned to share the information with their health care provider, and 51% (n = 286) reported that the information made an impact on treatment or quality of life. For 96.2% of users (n = 545), some or all of the information provided had not been received through any other source. Discussion: The results demonstrate that, despite the end-user driven Internet, patients and families are not able to find all the information they need on their own. Expert searching remains an important role for librarians working with consumer health information seekers.
