School of Information Studies and RIPPLE, Charles Sturt University, Wagga Wagga
Designing health information systems for consumers is a complex challenge, particularly given the reach of ‘global’ information resources within ‘local’ health-care contexts. Although it is challenging to provide trustworthy, often technical information to people without professional health training, many individuals do become “personal experts” in managing their own (and family members’) care and require specific types of information. In library and information studies, research examines individuals’ health information needs, with a focus on patients, caregivers, and other consumers, including the viability of systems to guide patients’ access to information (e.g., Ankem 2006; Rada 2006). In addition, medical practitioners are also exploring the viability of the internet as a tool for patient education (e.g., Ansani et al. 2006). However, these studies do not explore the influence of daily decision-making on the use of online health information tools, particularly when individuals within one country/province must integrate findings from other jurisdictions into daily health practices. Similarly, these studies do not address how information tools might evolve so individuals control the format, level and health-management possibilities of the information needed to suit their personal health contexts.
This presentation will explore the development of a health information interface that uses an avatar of the health consumer’s body as a site for information seeking. The search affordances of the human body – from a site for content-based searching (e.g., health symptoms), to a representation of one’s physical self (or those of individuals one cares for in their lives – such as young children or aging parents) will be explored. The prototype health information system is the result of a research project funded by the Social Sciences and Humanities Research Council of Canada. The research study was designed to build a health information system relevant to Canadian consumers and presenting information in ways that meet individuals’ needs (whether newly diagnosed or living with chronic illness). The resulting prototype is now in the final testing phase, where it will be expanded to suit an international consumer base.
This research extends a pilot project that used a prototype drug database to examine these issues with one demographic – i.e., seniors – with respect to their everyday health information needs (e.g., Given et al. 2007). The current study includes a more diverse group of users (e.g., caregivers, parents) of various ages, backgrounds, and health circumstances and covers additional types of health information. The presentation will report the results of the project’s first phase, in-depth, qualitative interviews with 15 health consumers managing complex health regimes. The goals of these interviews were: 1) to examine individuals’ health-related information practices when faced with complex health situations; and, 2) to provide data for the creation of computer interfaces to support effective information retrieval among non-expert users. The interviews (including time spent exploring existing health websites) focused on the health contexts shaping these individuals’ experiences, the types of resources they consulted, and the features and content they required in a health-information management system.
The results outline key issues to address in the delivery of online health information and in the design of effective tools. The interviews highlight the challenges involved in obtaining and managing health information in a global context, when online resources may not apply to local jurisdictions governing health-care practices. For example, participants discussed frustrations with reviewing American and British health information online when specific drugs, clinical trials, treatments, etc. were not available to Canadian consumers. These findings are also relevant to health consumers in other countries, including Australia. The results demonstrate the complexity of supporting individuals’ health information needs in a global health context, given the diverse set of possible tools desired by consumers (e.g., FAQs; drug tracking tools), to access a broad range of information types and levels (e.g., definitions; clinical trial results). The interviews informed the design of a system for consumer health information management (currently at the prototype testing stage), including an overview of “do’s” and “don’ts” from an emergent list of more than 25 tools and health-related topics identified by study participants.
This paper addresses the symposium’s theme by exploring the affordances of the human body as a search tool, through the development of consumer-designed avatars. The resulting prototype (which will be shown during the session), is one where consumers can search for health information and use a variety of consumer-designed tools, to support their personal health information needs.
Ankem, Kalyani. 2006. Use of information sources by cancer patients: Results of a systematic review of the research literature. Information Research 11, no. 3. Available at: http://informationr.net/ir/11-3/paper254.html.
Ansani, Nicole T., et al. 2006. The Drug Information Center Arthritis Project: Providing patients with interactive and reliable arthritis internet education. Drug Information Journal 40, no. 1:39-49.
Given, Lisa, Stan Ruecker, Heather Simpson, Bess Sadler, and Andrea Ruskin. 2007. Inclusive Interface Design for Seniors: Exploring the Health Information-Seeking Context. Journal of the American Society for Information Science & Technology. 58 no. 11: 1610-1617.
Rada, Roy. 2006. Information retrieval for online patient groups. Health Information and Libraries Journal 23, no. 1:60-65.