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Lost, Found, and Feeling Better: Exploring Proxy Health Information Behavior

Dr. Karen E. Fisher Associate Professor, The Information School, University of Washington Box 352840, Seattle, WA 98195-2840 Voice: (206) 543-6238; Fax: (206) 616-3152 Jennie A. Abrahamson, PhD Student, Department of Medical Informatics & Clinical Epidemiology, School of Medicine, Oregon Health & Science University Anne G. Turner MLIS Student, The Information School, University of Washington Phil M. Edwards PhD Student, The Information School, University of Washington Joan C. Durrance Professor, School of Information, University of Michigan

Sparking Synergies: Bringing Research and Practice Together @ ASIST '05 (ASIS&T 2005)
Westin Charlotte, Charlotte, North Carolina, October 28 - November 2, 2005


In studying how people use the Web for situations involving consumer health information (CHI), we examined the phenomenon of proxy searching, i.e., when people seek information on behalf of others without necessarily being asked or engaging in follow-up. The prevalence of proxy health information seeking has been observed to be as high as 54% of all health information seekers (Fox & Rainie, 2000). Many health care researchers refer to these information seekers as “hidden patients” and have noted the importance of addressing their information needs, particularly because these needs often become lost among those of the patients they are related to (Meissner, et al., 1990; Ell, 1996; Kristjanson & Aoun, 2005). Thus while the needs of these hidden patients are negotiated by others (who are largely not information professionals), their behaviors regarding how they further seek, use and don’t use information are also invisible. To date, little information science research has focused upon proxy information behavior as specific to the health context.

We investigated people’s motivations for, uses, and the effects of proxy health information behavior through online surveys (n = 207) and follow up telephone interviews (n = 21) with visitors to NLM-sponsored and University of North Carolina at Chapel Hill-run, health resource that provides statewide health provider listings and MEDLINEplus database access. We compared and contrasted our results with those reported by information science researchers who studied proxy searching in other settings (e.g., Erdelez, 1996, 1999; Gross, 1995; Gross & Saxton, 2001; Erdelez & Rioux, 2000; Pettigrew, et al., 2002; Rioux, 2004) and examined them with respect to several information behavior theories regarding human communication and social relations.

Our results indicate that proxy health information behavior shares many of the same attributes discovered in previous studies, but may also exhibit characteristics that are unique to the health care environment. We suggest that these findings may have implications for CHI system and health services design and could inspire further research in information science, biomedical informatics, and health care quality and outcomes.

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