Lost, found, and feeling better: Exploring proxy health information behavior

Karen E. Fisher, Corresponding Author The Information School, University of Washington, Box 352840, Seattle, WA 98195-2840, Voice: (206) 543-6238 Fax: (206) 616-3152 fisher@u.washington.edu Jennie A. Abrahamson Department of Medical Informatics & Clinical Epidemiology, School of Medicine, Oregon Health & Science University abrahamj@ohsu.edu Anne G. Turner Student, The Information School, University of Washington Box 352840, Seattle, WA 98195-2840 anne.turner@comcast.net Phil M. Edwards The Information School, University of Washington Box 352840, Seattle, WA 98195-2840 pme@u.washington.edu Joan C. Durrance School of Information, University of Michigan 550 E University-3084 West Hall Connector Ann Arbor, MI 48109-1092 Voice: (734) 763-1569 Fax: (734) 764-2475 durrance@umich.edu In studying how people use the Internet for situations involving consumer health information (CHI), we also examined the phenomenon of proxy searching, i.e., when people seek information on behalf of others without necessarily being asked to do so or engaging in follow-up. Proxy searching has also been referred to as the imposed query, or a query which is precipitated by questions generated by others, such as teachers, employers, friends, or family members (Gross & Saxton, 2001). The prevalence of proxy health information seeking has been observed to be as high as 54% of all health information seekers on the Internet (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 can become lost among those of the patients they are related to (Meissner, et al., 1990; Ell, 1996; Kristjanson & Aoun, 2005). The needs of these hidden patients are often negotiated by others who are largely not information professionals, so their behaviors regarding how they further seek, use and don’t use information in formal situations are also invisible. To date, little information science research has focused upon proxy information behavior specific to the health care context.