Introduction 6 27 28 31 41 31 32 prevented 16 17 34 35 50 51 10 18 19 23 33 48 50 54 access 1 49 43 should be 1 56 2 The Importance of the State in Configuring Users of Technologies 3 58 5 52 38 52 53 38 indirectly 8 49 26 1 4 http://www.healthfinder.gov http://www.medlineplus.gov 5 ,  6 Textbox 1 Overview of home pages for cited examples http://www.healthfinder.gov plus http://www.medlineplus.gov http://www.quackwatch.org http://www.hon.ch http://www.medcertain.org http://www.medcircle.org http://www.qmic.nl/qmic/home.do http://www.who.int/immunization_safety/safety_quality/approved_vaccine_safety_websites/en/ These self-ascribed roles lead to numerous questions, such as why UN NGO status (in the case of HON) or a “neutral position” (claimed by the WHO) is crucial to building claims about the reliability of medical information. Why is a ‘.gov’ domain “more reliable” than a ‘.com’ and where does the ‘.org’ domain rank in relation to other existing and proposed domains? What potential tensions arise between states and citizens (or even NGOs and citizens) in these settings? Although these questions would be difficult to answer, they do give us cause to think about the political messages that are sent to lay information seekers when they are instructed on how to search for, evaluate and use web-based medical information. Informed Patients...Reflexive Consumers...Ideal Citizens? 44 22 13 29 32 36 7 9 45 rights 25 24 15 16 How the Initiatives Enroll Citizens and Consumers 52 53 Highlighting Risks and Providing Simple Instructions for Combating Them One evident strategy for interesting patients in the need to check the reliability of the information is the construction of web-based information as information that puts individuals at risk. Because of the nature of the web, information can come from anyone, anywhere—it originates outside of a given country, in another medical tradition or health care context and as such it is foreign and worthy of suspicion. If information isn’t pre-approved, individuals could be making their decisions based on wrong information, fraud, or quackery. An individual’s health is potentially endangered because this information is always potentially just one mouse-click away and is difficult to distinguish from “truly reliable” information. In the language of this discourse, boundaries are constructed around information—these boundaries distinguish, for example, between geographic locations, but also reinforce more traditional ideas by distinguishing between lay persons and experts. 21 35 alert us bona fide 7 8 9 background 10 11 The user that all of these organizations presuppose is someone who, like the project reviewers, is (or should be) familiar with the ethical issues underlying the provision of any, but especially medical, information on the web. We begin to see how political actors invent new modes of indirect steering for empowering users such that they choose specific paths. They attribute to these users skills and practices more in keeping with professional levels of information assessment and action. But they also make these practices “user friendly” by emphasizing the ease with which information can be checked, with little additional thought or demands on time, and by encouraging participation in partnerships with them. Directing Paths Toward Information The various initiatives also emphasize their links to the medical community and partnerships with one another. This is evident in at least three forms: logos from other departments and organizations placed on websites, joint projects with physician’s organizations and overt statements about the best course of action that are located on websites. At the time of writing, HON’s website includes the logos of the University Hospital, the EU, the city of Geneva and Sun Microsystems. The tag lines for each individual logo identify how these different groups provide social and technical support for HON and its web activities. These logos show that HON is part of a larger national and international community that transcends medical practice, politics and businesses—and suggest that evaluating medical information on the web can only be done in this context. 12 1 Fig. 1 Example of one version of the prescription pad that physicians can give to patients during the consultation to refer them to web-based information about a specific health topic  plus. plus. 12 http://www.hon.ch http://www.healthfinder.org/ 13 14 16 plus 9 1 plus Individualizing Choice Along the Way 2 Fig. 2 http://www.medcircle.org  The confidence rating and other information provided by the tool are only available for sites already in the HON or MedCIRCLE databases. While these types of tools suggest the importance of individual choice, they nonetheless hold individuals responsible for following the ‘right’ paths to information. In this sense, the discussion is not merely an issue of creating reflexive consumers, but also of judging non-reflexivity as irresponsible and deviant. Following the Path Back to the State The responsibility for finding good information and avoiding the risks associated with bad information on the internet becomes collaborative and distributed. Within this context, individuals are held responsible for the choices they make, how they engage with available information and how they engage with other actors in the collaborative process. This process involves new actors, such as HON and MedCERTAIN/MedCIRCLE, but also longer standing actors, such as the WHO, state governments and medical associations. Reliability is created through distributing skills, information, and practices, and is intertwined with the creation of new networks that bind together the technical and social. We see this in especially in uses of internet-based technologies to further public health education. 15 16 The links that are selected for inclusion in the newsletters link largely to other parts of the Department of Health and Human Services and to other health-related government institutions (.gov domain endings), such as the National Institutes of Health (of which NLM is also a part) or the Centers for Disease Control and Prevention. As these examples show, different actors have developed practices that place various elements in new and unique relationships with one another. Issues related to health become intertwined with, for example, federal holidays. The health practices of the individual are now inextricably linked with diverse forms of community participation. In this sense, health education and enrollment is no longer only or primarily about verifying online health information, but rather about diverse activities that extend beyond the online realm. Directly Linking Health Practices and Citizenship These initiatives are tools to help people find and/or check information and about helping lay persons become empowered, not merely through distribution of information, but also through coaching or education in how to participate more actively in the search for and use of information. Users are invited to join specific, defined communities that will, in one way or the other, protect them from misinformation and inform them about better ways to act. HON even emphasizes the strength and necessity of its partnership with lay users in able do what it sets out to do—HON cannot help lay users if the lay users do not help HON. Additionally, there is a normative message about responsible citizenship. HON, for example, responds to individuals who follow their instructions and report (suspected) misuse of the HONcode icon by thanking them for their “sense of civic duty” and healthfinder’s newsletters make the initiative much more than just a gateway, or portal, to links of organizations with information. They also serve a promotional function to keep visitors returning to the healthfinder website and getting them to link through to other government sites. Further still, they show that being an active consumer and responsible citizen involves more than merely checking the information one encounters on sites or reporting misinformation and/or misuse of seals through certain channels. The responsibility extends into all areas of daily life (from good nutrition to awareness about possible diseases) and extends beyond individuals to include not only family or friends, but also the community-based or social responsibility that accompanies participation in educative programs, activism, or fund-raising events. 14 53 Discussion 42 43 30 online offline This participation also forms a reciprocal relationship between the participant and the given organization—in return for making oneself available to the community, the burden to search for, find, and evaluate information is made easier. Searching can be done using tools within which information has been pre-selected and/or information can even be sent directly to the individual’s personal e-mail. Both of these technical options for acquiring information also carry an implicit social promise of being taken care of—protection from misinformation or mis-action due to lack of information. The readiness to participate in this partnership—the commitment of the organization to helping protect its user community is made explicit. 17 Although these initiatives claim to target “all users, everywhere,” they actually idealize use such that discussions about increased choice (and how this leads to patient empowerment) also carry the normative implications that “true” empowerment is only possible when the “right” choices are made. Within these discussions, individuals have the responsibility to develop skills that make them informed consumers, and the process of acquiring these skills also enables them to contribute their part to the greater civic communities in which they engage. The additional implications connoted by the terms “citizen” and “consumer” raise the question of whether these really are more suitable as replacements for the word “patient” than other suggested alternatives. Conclusion Whereas discussions of technologies and their users have largely neglected to consider the role of states (and other political actors), discussions of the relations of states and individuals have not always considered the important reciprocal effects of and on changing technologies. Discussions of skill manage to link individuals to individual technologies, but they have not successfully coupled this back on the role of states. This paper has used the discussion about the reliability of web-based information to attempt to bridge these gaps and demonstrate the integral relationship between technologies and users, states and individuals, and individuals and the development of skills. It shows that political actors, including both governmental and non-governmental organizations, make presumptions about citizen willingness to use certain technologies and, as such, utilize soft power to encourage these citizens-as-users-of-technologies to forward certain agendas. 37