Journal Name: Information, Communication & Society: Volume 7, Number 4, December 2004
Online ISSN: 1468-4462, Print ISSN: 1369-118X
Freedom or Folly? Canadians and the Consumption of Online Health Information (pp445-465)
By Faiza Hirji
The concept of e-health has come to assume a key place within a larger Canadian governmental discourse that lauds the benefits of supplying Internet-based services to as wide an audience as possible. In order to fulfil its vision of a connected public accessing services cheaply and easily through electronic media, the federal government has assumed that the potential exists for all Canadians to use the Internet and has done its best to achieve this result through programmes aimed at ameliorating accessibility issues. There is particular enthusiasm over the possibility of moving some health services online, thus reducing costs incurred through personal patient-practitioner meetings while ostensibly creating more informed, proactive and healthy Canadians. This paper discusses whether or not the enthusiasm of the government, and of individual users, regarding e-health practices is merited, focussing particularly on the consumption of online health information by patients. Numerous consequences and conflicts can accompany such practices, but this paper specifically addresses the negative aspects of promoting informed health choices through a medium inaccessible to all members of Canadian society, such as the aged, the poor, rural dwellers and some ethnic minorities. The paper also assesses the potential risks of acting upon incorrect information provided online and addresses the possibility that health professionals' workloads will increase rather than decrease. However, as this paper also notes, e-health does contain potential for improving the delivery of medical services in Canada if contained within clearly defined parameters, and if alternatives still exist for those who cannot or will not benefit from such technology.
Keywords: Internet, online health information, access, digital divide, e-health, Canadian health care
Empowering Patients Through Access to Information
The United States Department of Health and Human Services' e-health enterprise (pp466-490)
By Mary F. Theofanos and Conrad Mulligan
The United States federal government is in the midst of an e- government revolution characterized by a shift from paper-based citizen-government interactions to electronic-based interactions. Driven by the demands of citizens and supported by the President and Congress, federal departments are redesigning the look and feel of their Internet presences, moving away from traditional bureaucracy- centred presentation of information to more usable citizen-centred presentations. The Department of Health and Human Services (HHS), the USA's principal federal agency tasked with protecting the health of all Americans and providing essential human services, has undertaken a massive reorganization of its e-health enterprise. The most publicly visible component of this reorganization is the hhs.gov portal website. This desperately needed portal - usability testing indicated that more than 60 per cent of visitors to the Department's original website failed to find the information they sought - provides easy access to the wealth of HHS information and links its diverse operating agencies. The new HHS portal simplifies citizen access to the Department by: decompartmentalizing information by removing content from bureaucratic silos and rearranging it in a natural navigation scheme; tuning content and navigation features to ensure that all users have access to information tailored for them; presenting content in appropriate and citizen-preferred formats; and complying with federal accessibility regulations for blind and vision-impaired users. This paper presents a series of lessons learned during the development of the HHS portal, and results of usability testing to determine what common design features present accessibility problems particular to the blind and vision-impaired communities. These discussions of practical avenues to improving the accessibility and usability of e-health websites through appropriate and effective information designs are followed by our thoughts on the future of Internet architectures and the limitations of 'layering' technologies when striving for universal accessibility.
Keywords: accessibility, usability, citizen-centred, navigation, portal, United States Department of Health and Human Services
Health Information Seals of Approval: What do they Signify?
By Jacquelyn Burkell
Much of the health information available to consumers on the Internet is incomplete, out of date and even inaccurate. Seals of approval or trustmarks have been suggested as a strategy to assist consumers in identifying high-quality information. Little is known, however, about how consumers interpret such seals. This study addresses this issue by examining assumptions about the quality criteria that are reflected by a seal of approval. This question is of particular importance because a wide variety of quality criteria have been suggested for online health information, including: core aspects of quality such as accuracy, currency and completeness; proxy indicators of quality such as the disclosure of commercial interests; and indicators that reflect the quality of the site or the interaction it affords, such as the availability of a search mechanism. The results of this study suggest that seals of approval are assumed to certify information quality primarily with respect to core quality indicators, aspects that subjects both consider to be important and feel relatively less able to evaluate for themselves (compared with their ability to rate proxy indicators of information or indicators of site or interaction quality). This assumption is largely inconsistent with practice: most seals of approval involve assessment of proxy indicators of information quality, rather than direct assessment of content. These results identify a problem that certification or accreditation bodies must address since, unless and until consumer expectations are congruent with evaluation practice, seals of approval will seem to promise more than they deliver.
Keywords: consumer health information, Internet, quality assurance, trustmarks, seals of approval
Researching the 'Informed Patient':
The case of online health information seekers (pp510-530)
By JoŽlle Kivits
This paper raises the question of the significance of information practices for individuals' management of personal health. In particular, it focuses on the notion of an 'informed patient'. The question of expertise is examined first through an analysis of the nature of information sought, the trust placed in information sources and the challenge to professional authority, and then in the light of the everyday dimension of information seeking that pervades all living interactions. Taking the case of online health information seekers, the paper is based on interviews conducted with Internet users, using the electronic medium for health information. Study findings reveal the everyday dimension of the information sought and the importance of 'experiential knowledge' over medical expertise. Rather than dismissing experts' authority, findings show how the mediated environment of the Internet favours a process of displacing and regaining trust in professionals. The paper argues that the use of the Internet by a lay public for health information reflects individuals' socio-cultural information contexts, drawing the contours of a responsible project of health by means of information. 'Informed patients' are negotiating agents whose health responsibility is both a matter of increasing knowledge about everyday experience as part of a reflexive project and a matter of locating this project within a broader informational environment.
Keywords: informed patient, Internet, expertise, information age, agency, health role
An analysis of the everyday use of the Internet for health (pp531-553)
By Sarah Nettleton, Roger Burrows, Lisa Malley, Ian Watt
This paper presents a simple typology of different forms of engagement with the Internet by families with children with various forms of chronic illness. The analysis is informed by ongoing debates about the nature, distribution and efficacy of reflexivity in contemporary social life, especially as it relates to the changing nature of information and knowledge. Drawing upon qualitative interviews with sixty-nine parents and sixteen children, the paper offers a nuanced account of the manner in which laypeople are engaging with e- health. It is an account that argues that any reading of the 'digital divide' that is based upon a simple homology between socio-structural location, reflexivity and differential ability to gain material purchase from information in the 'information age' is misjudged.
Keywords: Internet, e-health, reflexivity, chronic illness, digital divide
Turning to the Internet for Help on Sensitive Medical Problems
A qualitative study of the construction of a sleep disorder through online interaction (pp554-574)
By Corinne Weisgerber
The purpose of the present study was to examine how members of an online bulletin board group concerned with sleep paralysis (SP) use the Internet to establish what it means to experience the symptoms associated with a mysterious sleep disorder. Data from 646 posts to the bulletin board, and from ten in- depth interviews with select bulletin board users, revealed that board participants constructed their disorder in three different ways: while some considered it a purely physiological problem, others believed it to be a demonic attack or a paranormal phenomenon. Results indicated that people suffering from SP are driven to the Internet by their desire to make sense of their terrifying nocturnal experiences. Rather than dispelling the myths surrounding this sleep disorder, the Internet in this study was, however, found to reinforce them by offering a forum for the discussion of alternative explanatory frameworks.
Keywords: Internet, sleep disorder, sleep paralysis, e-health, online health, electronic bulletin board
(This journal is available online: http://www.tandf.co.uk/journals/titles/1369118x.html)
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