ABSTRACT
BACKGROUND: Experts in gynecological cancer care recommend that all patients with invasive or high-grade ovarian cancer (OC) undergo genetic testing. However, even patients who intend to take or have taken genetic tests have many unaddressed information needs regarding genetic testing. Existing genetic counseling falls short of adequately addressing this challenge. OBJECTIVE: This study aims to investigate the genetic testing-related information needs of patients with OC to inform the design of interactive technology-based interventions that can enhance communication of genetic testing information to patients. METHODS: We interviewed 20 patients with OC who had taken genetic tests and gathered genetic testing-related messages from an active OC web-based community. The interview transcripts and web-based community messages were analyzed using the qualitative content analysis method. RESULTS: Data analyses produced a comprehensive taxonomy of the genetic testing-related information needs of patients with OC, which included five major topic clusters: knowledge of genetic testing as a medical test, genetic testing process, genetic testing implications for patients, implications for family members, and medical terminology. Findings indicated that patients wanted to receive information that was relevant, understandable, concise, usable, appropriate, sympathetic, and available when needed. They also preferred various channels to receive information, including internet-based technologies, print, and conversations with health care providers. CONCLUSIONS: Patients with OC need a range of information to address the uncertainties and challenges that they encounter while taking genetic tests. Their preferences for channels to receive information vary widely. A multichannel information delivery solution that combines both provider-led and peer-to-peer education models is needed to supplement existing genetic counseling to effectively meet the genetic testing-related information needs of patients with OC.
ABSTRACT
Embedded in the notion of the archive as knowledge infrastructure is the idea of a steady flow of information that resides within and moves through socio-technical systems. While there is exponential growth in the information transferred between the creator and the archive, the information flow between the archive and the user is often leaky-discontinuous and disrupted. There is a considerable interval between the time archival material are accessioned, processed, and made accessible for research. It is in this space that what archivists euphemistically call 'the backlog' comes into existence. What the backlog interrupts is the distribution and consumption end of the research process. As a concept and a reality, the backlog is a critical point of failure, carrying with it an ongoing and prevailing sense that 'deferred maintenance' has become the norm in the archive. In this article, focus is placed on framing and understanding the backlog as an infrastructural problem and on highlighting the conflict inherent in various forms of discourse seeking solutions to it.
ABSTRACT
BACKGROUND: As the quality of online health information remains questionable, there is a pressing need to understand how consumers evaluate this information. Past reviews identified content-, source-, and individual-related factors that influence consumer judgment in this area. However, systematic knowledge concerning the evaluation process, that is, why and how these factors influence the evaluation behavior, is lacking. OBJECTIVE: This review aims (1) to identify criteria (rules that reflect notions of value and worth) that consumers use to evaluate the quality of online health information and the indicators (properties of information objects to which criteria are applied to form judgments) they use to support the evaluation in order to achieve a better understanding of the process of information quality evaluation and (2) to explicate the relationship between indicators and criteria to provide clear guidelines for designers of consumer health information systems. METHODS: A systematic literature search was performed in seven digital reference databases including Medicine, Psychology, Communication, and Library and Information Science to identify empirical studies that report how consumers directly and explicitly describe their evaluation of online health information quality. Thirty-seven articles met the inclusion criteria. A qualitative content analysis was performed to identify quality evaluation criteria, indicators, and their relationships. RESULTS: We identified 25 criteria and 165 indicators. The most widely reported criteria used by consumers were trustworthiness, expertise, and objectivity. The indicators were related to source, content, and design. Among them, 114 were positive indicators (entailing positive quality judgments), 35 were negative indicators (entailing negative judgments), and 16 indicators had both positive and negative quality influence, depending on contextual factors (eg, source and individual differences) and criteria applied. The most widely reported indicators were site owners/sponsors; consensus among multiple sources; characteristics of writing and language; advertisements; content authorship; and interface design. CONCLUSIONS: Consumer evaluation of online health information is a complex cost-benefit analysis process that involves the use of a wide range of criteria and a much wider range of quality indicators. There are commonalities in the use of criteria across user groups and source types, but the differences are hard to ignore. Evidently, consumers' health information evaluation can be characterized as highly subjective and contextualized, and sometimes, misinformed. These findings invite more research into how different user groups evaluate different types of online sources and a personalized approach to educate users about evaluating online health information quality.
