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Turned on or turned off? Accessing health information on the Internet )OLV +HQZRRG 6DOO\ :\DWW $QJLH +DUW -XOLH 6PLWK b dÃTpu‚‚yÂsÃDs‚…€h‡v‚ÃHhhtr€r‡ÃVv‰r…†v‡’ÂsÃ7…vtu‡‚Ãsur‚‚q5i‡‚hpˆxÃÃb!dÃ6€†‡r…qh€ÃTpu‚‚yÂsÃ8‚€€ˆvph‡v‚†ÃSr†rh…puÃVv‰r…†v‡’ÂsÃ6€†‡r…qh€Ãb"dÃ8r‡…rÃs‚…ÃIˆ…†vtÃhqÃHvqvsr…’ÃSr†rh…puÃVv‰r…†v‡’ÂsÃ7…vtu‡‚ $EVWUDFWIt is often claimed that Internet access provides people with more and better health information, resulting in better-informed patients who engage in more reflexive and equal negotiations with their doctors. Counter arguments suggest that Internet information overload will increase levels of anxiety and confusion amongst health care consumers, resulting in their disempowerment. This paper discusses on-going research investigating the ways Internet users and non-users access and manage information about specific health treatments. The paper describes how our research design and methodology is enabling us to avoid the generalisations and tendencies towards technological determinism found in much previous research in this field. .H\ZRUGVInternet, health information, patients, HRT, Viagra Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 79 innovative aspects of our research design and In this paper, we describe an on-going research methodology are enabling us to go beyond the project that examines the validity of claims generalisations found in much previous work in being made about the role of the Internet in this field and, at the same time, avoid the patient/consumer empowerment. Whilst it is tendency to link technological and social change widely accepted that developments in within such deterministic frameworks. information and communication technologies In the next section, we outline what social (ICTs) present opportunities for improving science – particularly technology studies and access to information about health, very little is medical sociology – can contribute to the debate known about where and how people do access and manage health information. Recent health consumer’, the ‘informed patient’ and the role policy documents in the UK suggest that the greater availability of health information via the Internet will lead to the emergence of more Following that, we describe our research design informed patients who are better able to assess and methodology that starts with individual the risks and benefits of alternative treatments ‘patient participants’ and follows them over a for themselves. This is said to lead to the period of time to analyse and understand more emergence of more equal patient-provider about their information practices. Several relationships and a more equitable distribution innovative aspects of our methodology are addressed. We first outline the many advantages Executive 1998). In contrast, counter arguments of our longitudinal approach. We then outline suggest that the increase in the provision of the rationale for grounding our research in a online information sources may be at the study of ‘users’ (including potential and ex- expense of offline ones, thereby reinforcing existing patterns of inequality and/or interventions – HRT and Viagra. We then reconstructing new ones, based on differential access to the skills, equipment and services information as ‘discourses’ that can be identified required to take advantage of the information in various health information texts. Then we carried by new media (Schiller 1996; Thomas turn to an examination of how our cross-media and Wyatt 2000). Concerns have also been emphasis enables a comparison both of different raised about the over-abundance of information available online, leading to confusion and Internet. Finally, we discuss the implications of ontological anxiety (Beck 1992), as lay users do our approach for understanding more about the not have the expertise to evaluate and interpret processes of social exclusion and inclusion. the appropriateness of the information. This Wherever possible, we illustrate the successes point is partly supported by press reports of (and limitations) of our research design through ‘Internet Print Out Syndrome’ (The Independent 1999) where patients confidently misdiagnose themselves and put pressure on health care professionals to provide inappropriate IURP VRFLDO VFLHQFH In this section we argue that critical approaches The project we describe here set out to examine to the study of technology in health care can such polarised claims via detailed empirical enable us to challenge the technological investigation of the ways both Internet users and determinism and techno-euphoria found in non-users access and manage information about much of the policy and technical literature. specific health treatments. The aim of this paper Following dominant thinking in technology is to describe how we have drawn upon social studies, we start from the assumption that science perspectives from both technology technologies do not determine patterns of use. studies and medical sociology to inform our Instead, technology and social practices are research design and methodology. The paper understood as mutually constitutive (see, for 80 Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 example, Bijker et al. 1987; Mackenzie and many industrialised countries half or more of Wajcman 1999). From within this technology the adult population has home Internet access, studies literature, we are particularly interested although in countries such as France, Spain and in that which seeks to better understand the uses Italy it remains under one third. The US and and users of technologies. Here, we have been Canada with only 5 percent of the world’s influenced by the work of Woolgar (1991) on population account for over 40 percent of the ‘configuring the user’ and of Akrich on ‘scripts’ world’s Internet users (Pastore 2001a). Within countries, although the exact patterns may vary emphasised the ways in which particular depending upon local traditions of inequality representations of users become embedded in and exclusion, so-called ‘digital divides’ exist, technological design and how such design then between men and women, between young and limits the range of users and uses to which that old, between different ethnic groups (Schiller technology can be put. However, other work on 1996; Wyatt et al. 2000). It seems reasonable to the consumption, ‘domestication’ or assume then, that many people continue to ‘appropriation’ of technologies (Silverstone and Hirsch 1992; Lie and Sørensen 1996) has also In our research, we consider such inequalities of been instructive for us. Here, technologies are access to the Internet in the context of health examined in the context of ‘everyday life’, with information. We do not take for granted the emphasis on the highly contextualised and claim that Internet access necessarily confers embedded characteristics of both users and use. advantage and that, in turn, non-access results in In our attempts to compare dominant disadvantage and social exclusion. In addition, representations of uses and users of the Internet we take a broad view of ‘access’, not seeing it with actual use and users, we seek to make simply as having a home Internet connection or visible the very different contexts of Internet use not. Many more people have access via schools, or non-use and identify the factors that shape universities, libraries, workplaces or cafés. such use practices. We should make clear that, These different contexts or ‘sites’ of access and although we have regularly used the terms use may also influence the types of information ‘use/r’ and ‘non-use/r’ as shorthand in the sought and the experience of use. We shall design stages of our project, we find the return to this issue in our discussion of research use/non-use distinction largely unhelpful for our methodology and preliminary findings in a later overall purpose. This has always been to better understand the many different ways in which people engage with the Internet, alongside other After pornography, health information is the media technologies, in the context of wider most sought after material on the Internet health information landscapes. As we hope to (Pinkowish et al. 1999). A survey by the Boston show, our longitudinal design is proving Consulting Group (Pastore 2001b) suggests that particularly appropriate for highlighting the 75 percent of all US adults who are online use extremely dynamic nature of Internet use in a the Internet to look for health information. Nearly half of these subsequently use that information in their consultations with health Before moving on to discuss our methods, care professionals. However, previous research together with some preliminary findings that (Wyatt 1999; Eysenbach 2000) suggests that help illustrate the successes (and limitations) of remarkably little is still known about who those methods, we briefly review recent work accesses online health information, if the on health information and the Internet and on information is substantively different and/or the patient-provider relationship in late differently interpreted from information modernity to better situate our research within available offline, and how information sourced via different media affects patient-provider Crhy‡uÃvs‚…€h‡v‚ÃhqÇurÃD‡r…r‡Ã relationships and subsequent treatment outcomes. Internet usage has grown dramatically in most industrialised countries since the development Our research is primarily concerned with the of the World Wide Web in the early 1990s. In informational activities and experiences of those Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 81 that are commonly referred to as health care consumers. However, one of the common In another study of online self-help groups, claims about the Internet is that it blurs the Burrows et al. (2000) address questions of risk, boundary between consumers and producers reflexivity and the emergence of consumers who (Thomas and Wyatt 1999) – this is certainly true are also ‘producers’ of health information. They when it comes to health information which may argue that ‘(T)here is no doubt that growing then impact on care. The blurring of this numbers of people across the globe are using e- boundary in the health area is explicitly addressed by Ferguson (1997). He examined discussion lists, news groups, MUDs [multi-user what those he describes as ‘online self-helpers’ domains], IRC [Internet relay chat], and other are actually doing when they go online for forms of computer mediated communication health purposes. He found that roughly 25 (CMC) to offer and receive information, advice percent of the search engine queries on the Web and support across a massive range of health involve people looking for information or and social issues’ (Burrows et al 2000, p. 121). advice on health-related matters and that such Like Ferguson, Burrows and his co-authors find Internet users were very proactive in their use of that such users are very active in contributing to the Net. They may be sending email to friends the ever-growing volume of health information or getting support in dealing with their health on the Internet. This alerts us to the possibility problem. They may find and sign up for an that health care consumers may be active in email list or USENET newsgroup for their chosen health topic. They may visit a support newsgroups, etc. and that, therefore, as well as forum on a commercial network such as AOL being recipients of information and advice from and Compuserve which combines asynchronous others (professional and lay) via this medium, chat, live chat, database information, and the they are also, very often, ‘producers’ of ability to do searches all grouped around information. This is an important starting point particular areas of concern. They may visit a for our research in which we view health care web site, consult a web directory or use a web consumers as active rather than passive in their search engine. Some consumers are even management of health information – that is, as ‘producers’ as well as ‘consumers’ of Ferguson argues that these ‘online self-helpers’ information, whatever the media form involved. are reshaping the health care system based on their own preferences. For example, many self- patient/consumer in the management of health help groups create their own ‘Frequently Asked Questions’ (FAQs) and reject traditional patient sociology and it is to this literature that we now information created by health care professionals such as a handout or leaflet which is then simply put up on the web in unaltered form. He found UurÃh‡vr‡ƒ…‚‰vqr…Ã…ryh‡v‚†uvƒÃvÃyh‡rà that consumers dislike the top-down approach taken in such information and the way it makes Much has been written in medical sociology the patient ‘the passive recipient of recently about the changing nature of the professionally controlled care’ (Ferguson 1997, patient-provider relationship in late modernity. p. 255). Ferguson further argues that the health One set of debates draws attention to the care professionals who participate in these emergence of the ‘informed patient’ and the online self-help networks have had to shift their perceived decline in medical authority resulting role from authority figure to facilitator, from the wider diffusion of medical information generating new roles for consumers and to the lay public. For example, in the late 1980s, providers. This research illustrates well the co- the ‘contractual model’ of the patient-provider construction of the technical and the social relationship emerged in medical sociology, discussed earlier. The Internet is instrumental in which contains an idealised notion of that shaping new social relations and social practices relationship and of the informed patient more in health but, equally, Internet ‘users’ here are, through their information practices, shaping 82 Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 assumptions: ‘The doctor would provide clear exclusively with the needs of health care information about treatment options and about professionals. He identifies a new and growing the risks and benefits involved. The patient, in turn, would offer to assess the information, be consumers and highlights two factors driving willing to ask pertinent questions and accept a this change. The first is the emergence of greater level of responsibility in accepting or evidence-based medicine and the second is a refusing treatment’ (Bury 1997, p. 98). growing awareness of the need to equalise relationships between health professionals and Giddens (1991), too, whilst acknowledging that lay people. These trends are partly the result of such active decision-making could pose a an effort to cut healthcare costs by improving ‘dilemma’ for patients who no longer had any patients’ ability to help themselves and make ‘overarching authority’ to whom they could informed choices. Eysenbach attributes a turn, nevertheless concurs that the overall specific role to new interactive technologies expansion in medical knowledge in late such as the Internet in this shift of emphasis modernity can empower patients. He illustrates this point with his now well-cited fictional account of a woman with back pain who finds “The increasing availability of interactive information from a variety of sources until she information that is accessible to consumers, is in a position to make ‘a reasonably informed most notably through the Internet and related choice’ (Giddens 1991, p. 141). This is one example of Giddens’ ‘reflexive consumer’, a television, coincides with the desires of most concept that has been very readily taken up consumers to assume more responsibility for within the social sciences and within medical their health and the pressures of costs on health sociology in particular. Its apparent link to the empowerment of patients has led some populations and on prevention, and the growing commentators to apply and interpret Giddens’ desire of health professionals to realise the concept in exclusively positive terms, often with potentials of patients and their families. the Internet being seen as the means by which Information technology and consumerism are such empowerment occurs. For example, synergistic forces that promote an “information Hardey claims that, ‘the Internet forms the site age healthcare system” in which consumers can, of a new struggle over expertise in health that ideally, use information technology to gain will transform the relationship between health access to information and control their own professionals and their clients’ (Hardey 1999, p. health care, thereby utilising health care 820, our emphasis). In this construction, we see resources more efficiently” (Eysenbach 2000, p. a conflation between information and 1714, our emphasis). empowerment with the Internet being the Eysenbach concludes his article by suggesting medium through which this empowerment takes that computers are not always the most effective place. An important goal of our own study is to means of communicating health information research and analyse the relationship between (Eysenbach 2000, p. 1719) and his more recent information and empowerment, rather than work is concerned with the important question simply assuming that access to information of the quality of health information on the results unproblematically in such shifts in power Internet (Eysenbach 2002). However, the overall towards patients. Furthermore, we want to tone of his work continues to be very optimistic identify the significance of different information about the potential of the technology. It is here media and sources for strengthening and that our research seeks to enter the debate and weakening the link between information and ask: How far do the assumptions embedded in the quote above hold true and for whom? Are The medical informatics literature contains interactive forms of information necessarily and similar deterministic assumptions to those always superior? Which consumers are discussed above. For example, Eysenbach ‘assuming more responsibility for their health’? (2000) highlights how, until very recently, How far do health care professionals welcome medical informatics was concerned almost the more informed and responsible patient? Is Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 83 the technological determinism in the latter part generating information about specific health of the statement borne out by experience? These problems and treatments. In this endeavour, we are some of the questions that our research is aim to keep the technology to the fore without reifying it or treating it as a determinant of patterns of social and cultural change. Our Eysenbach (2000) discusses a specific ICT chosen research design and methodology aims development that is designed to enhance to produce findings that will contribute to the consumer choice. These ‘decision aids’ are said to help clinicians integrate a patient’s preferences with scientific evidence, the information practices used by health care patient’s history and local constraints. They can consumers which may or may not be currently be used by patients with or without the physical supported by information and communications presence of health care professionals and are seen to be potentially valuable in those situations when different treatments may lead to different risk/benefit scenarios (Eysenbach LQWHUSUHWLQJ KHDOWK ULVNV2000, p. 1715). For example, with contraceptive choice, the decision aid would allow for patients to place values on outcomes such as unwanted Informed by the debates summarised above, we pregnancy versus venous thrombosis. Such tools are currently engaged in research, which brings for use by consumers sound very interesting together technology studies and health studies insofar as they recognise, and allow for, consumer preferences and values to be theoretical frameworks and methodologies for incorporated into the health care decision- exploring the technology-society relationship in making process. What counts as risky to some the context of health care settings. Building on consumers will be considered less of a risk to our recent work on ‘technology and inequality’ others, depending on the wider context within (Wyatt et al 2000), we also attempt to explore which they live their lives. Our research should whether and how ‘Internet inequalities’ apply enable us to throw more light on the processes specifically to the field of health information. by which health care consumers come to assess the risks and benefits of specific pharmaceutical We have argued above that it is important to interventions and to understand such decision- examine optimistic claims about the Internet making processes within the wider context of and the challenge to medical expertise through detailed empirical study of both on- and offline users of health information from a variety of We are, then, concerned with consumer health social, economic and cultural backgrounds. We information and its management and are aim to identify the factors which facilitate convinced by the argument that the widespread and/or inhibit the emergence of the ‘reflexive availability of health information via new consumer’ in the health care setting by media, such as the Internet, offers great examining the processes by which patients seek opportunities for enhancing patient health information both on- and offline, employ empowerment and choice. However, drawing on that information to assess health risks and insights from technology studies, we seek to benefits and to negotiate with health care avoid technological deterministic thinking, both professionals regarding treatment. Using this in its technophoric and technophobic forms. Just approach, our research assesses the extent to because a potential for such a development which more equal patient-provider relationships exists does not mean it will occur in all are emerging in late modernity and to what circumstances and for all people at all times. extent such patient empowerment is determined by access to, and deployment of, particular fragmented that such scenarios would lead us to sources of on- and offline information. In this believe. Our research sets out to examine what way, we situate our work within debates about is actually taking place on the ground, in the online health information firmly within wider everyday lives of real people seeking and debates about health inequalities and relations 84 Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 of knowledge and power in patient-provider extremely difficult. For this reason, examples relationships (Annandale and Hunt 2000). drawn from our preliminary analyses, which we use here to illustrate the success (and limitations) of our methodological approach The central objectives of our research are to: will, necessarily, be drawn from the HRT part of assess the ways in which patients access health information concerning two specific There are several advantages associated with the pharmaceutical interventions – hormone longitudinal design of our research. First, it is proving particularly important for overcoming the user/non-user distinction, which implies a very static model of the relationship between the benefits of these pharmaceutical social and the technical, and for capturing the interventions are interpreted by a range of dynamic processes of Internet use. For example, through our longitudinal approach, we are able to observe and monitor the processes of ‘becoming’ a user (Bakardjieva 2002) and are sourced both on- and offline for able to identify and explore a range of user identities: first-time Internet user, disillusioned provider relationships and for subsequent user, experienced user, etc. We are also able to explore how user identities shift and change over time and in relation to context- whether use patterns of social inclusion/exclusion in be for professional or private purposes, whether access sites are public or private, whether use is an individual or shared experience and so on. For example, one woman (Respondent 5) who Hr‡u‚q‚y‚tvphyÃv††ˆr†ÃhqÅryv€vh…’à had a PC with Internet access in her home described herself at the first interview as not The starting point for our research is people’s knowing how to use it. However, she also stated own experience of finding information on a her intention of taking an Internet training particular topic, using a ‘follow the user’ course for the over 50s in the coming months. In approach. The success of our research depends our follow-up interview, we are able to ask her on the establishment of long-term relationships to reflect on the experience of the training and with users of health information about the examine if and how her new skills have been potentially sensitive topics of sexuality and used in relation to health information seeking. ageing. For this reason, patient participants are Another participant (Respondent 8) might be being recruited at an early stage in their described as a ‘reluctant’ user of the Internet for reflections and negotiations regarding the health information. Although she has been using appropriateness of Viagra or HRT for their the Internet at home, on her television via Sky, particular health problems and are then followed for 3-4 years, her main use is for keeping in up over a period of 6-9 months or whilst such negotiations continue. Initial recruitment takes (especially to view digital photos of her place via two main routes: General Practice and granddaughter) who live at the other end of the specialist clinics (Gynaecology and Erectile country. Although she has consulted the Internet Dysfunction Clinics). Follow-ups are conducted for health information, she goes directly to sites by telephone, letter and/or email, as appropriate and with prior consent from participants. We are awareness of the sources of the information she currently in this ‘follow-up’ phase for the HRT is accessing. She identified no particular part of the study, having completed the first advantages to finding information online and round of interviews with 32 women. For the complained about getting too much information Viagra part of the study, we are still at the and having no-one to talk to about it. Another recruiting stage as securing the participation of participant (Respondent 9) is a regular Internet men for this part of the study had proved user but rarely uses the Web. Her main use of Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 85 the Internet is for communication as her lifestyle practitioners. Consent for this, in principle, is (living on a boat, away from family and friends) sought (and in most cases obtained) at the first for most of the year, means that she needs to interview and the long-term nature of the find ways of keeping in touch. She connects to research relationship enables a suitable the Internet via her mobile phone and uses this appointment to be identified and attended by a medium to send sections of her on-going diary member of the research team. The consent of to family and friends. When seeking out health the appropriate health care practitioner is sought information, she prefers face-to-face prior to the appointment. At these consultation consultation to computer- or telephone-mediated appointments, we are able to observe the forms of exchange. With this participant, the communication and exchange of information Internet has played a significant role in her between patient and doctor. The aim is to begin participation in the project, with regular emails to assess, for ourselves, the relationship between being exchanged between her and one of the researchers regarding changed health status and significance of different information media and sources for the process of becoming informed and/or empowered. We have several accounts, A second advantage of the longitudinal design is from interviews, of women having information enabling us to assess the significance of about their health problems and treatments that changing health status for the shaping of they intended to discuss with their doctors and information practices more generally. For yet were prevented from so doing for a variety example, we ask our women participants if, of reasons. These included lack of time, feelings where and how they have actively sought out that the doctor would not listen, actual rebuttal health information about the risks and benefits by doctors. We are keen to understand more of HRT. Here, early findings suggest that many about these attempts at information exchange in women are relatively passive concerning the clinical encounter and to be able to reflect information about the risks associated with HRT on their significance for the debate about until they experience negative side effects. It is empowerment. Follow-up interviews with both this change in health status, often associated patient participants and health care professionals with increasing health problems, that then are planned to reflect on the exchanges we have prompts them to become more active observed. information seekers. The longitudinal design has also offered the unanticipated advantage of A further advantage of the longitudinal design is being able to monitor participants knowledge of, the opportunity it offers to see how the research process itself affects participants’ practices. By research findings regarding HRT. In mid July drawing attention to the role of information and 2002, during our ‘follow-up’ phase with the different information media and sources in their HRT sample, part of a US clinical trial for hormone replacement therapy was halted necessarily influence information practices. For prematurely as findings suggested an increased example, at the end of the first interview, we set risk of breast cancer, heart attack and stroke up the means to facilitate follow-up: gaining amongst those taking a particular combined further consent, agreeing times and means for HRT treatment. We are able to take advantage of further contact etc. In addition, we ask this development in our follow-up interviews participants to keep a record of any information with women, noting if and how they came to be searching they do. When using the Internet, aware of the research findings, whether and participants are asked to ‘bookmark’ or at least where they undertook any active information make note of particularly helpful or unhelpful seeking for themselves, what information media websites. With offline searching, participants are asked to keep copies of leaflets, newspaper and magazine articles, etc., where they found Another advantage offered by the longitudinal information to be of interest. These notes or approach is the opportunity to observe records then form the basis of a follow-up consultations between our patient participants interview, where we ask participants to talk us and their doctors or other health care through the process by which the particular 86 Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 information was accessed, its significance to the participant at the time and the ways in which the discourses in their assessment of the risks and text is interpreted and used by the participant in benefits of Viagra and HRT. Here, we agree later encounters with friends, colleagues and/or with Lupton about the importance of analysing, “the ways that the discourses on the human In addition to the longitudinal design, the body, medicine and health care that may be research has four other innovative aspects. First, identified in such sites as mass media, medical the research is ‘grounded’ through its focus on two specific health treatments, Viagra and HRT. documents are recognised, ignored, contested, For reasons we have already explained, we were translated and transformed in the context of keen not to focus solely on Internet ‘users’, even everyday experience” (Lupton 1997, p. 108). if complemented by a ‘non-user’ group. Our This brings us to the third innovative feature of next option was to focus on a health condition our research – namely, our emphasis on or treatment about which people might need or presentation and interpretation of information want information and look at the use of the across different media. As our study begins with Internet in the wider context of health the experiences of patients, we go beyond the information seeking amongst the relevant Internet to examine the ways in which people patient groups. Focusing on HRT and Viagra has construct health risks and benefits within a enabled us to focus on the sensitive issues of broad information landscape, where a range of gender, sexuality and ageing. These are all different media and sources are employed and contested areas in health and therefore amenable where individuals are actively engaged in to an analysis of the different discourses in health information texts accessed and identified circumstances. We recognise that participants’ by research participants. Furthermore, the behaviour is being influenced by taking part in potentially very sensitive issues giving rise to the study but we are able to gain insight into the the need for, and the search for, information very real potentials and problems associated about Viagra and HRT are likely to have an with different information sources and media as experienced by different individuals, over time. searches were made or not made. This relates to We aim to locate this understanding in the wider the question of ‘access’, discussed again later. context of these people’s everyday lives. Our Of course, the focus on these two particular preliminary analysis of data from the first health treatments determines, to a large extent, interviews with the HRT sample shows that, the participant sample groups. The women whilst half the sample had used the Internet at recruited have an average age of 55, with the least once to access health information, very youngest being 39 and the oldest being 73. It is few did so regularly and GPs are still the most important then that we analyse our data in the important source of health information for these context of information practices of mid-life women, with 31 out of 32 citing GPs as an women. Similarly, as erection problems are important source. Family members, usually associated with ageing, we are not surprised to women, are the second most cited source, by 23 have a majority of older men in our small women. Friends, pharmacists and alternative health care practitioners were all cited by 22 Another innovative feature of our research is our intention of using discourse analysis to awareness of the potential of the Internet as a examine the representations of the body, gender, means to access health information but, at the sexuality, ageing, etc. in different information same time, the Internet is just one of many texts as well as the diverse meanings given to routes used by these women to access the those texts by users/consumers. Assumptions information they need. Furthermore, our more about the nature of the ‘patient’ (i.e., passive detailed analysis of actual Internet use by these patient versus active, empowered consumer) women showed a relatively low level of search and expert/lay knowledge will also be analysed, skills amongst this group with several relying with a focus on how consumers produce, resist Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 87 ‘information intermediaries’ (a family member, the source of information accessed – such mentioned) to guide them through their search. Perhaps surprisingly, when asked about useful sites, no-one explicitly mentioned the UK information – books, leaflets, TV, radio, National Health Service (NHS) accredited sites, consultation with medical professional or For each of these elements, different access If there was probably an NHS site or something issues arise. For example, physical access may like that on there, that’s probably the one I’d go be an issue in terms of the site of access – can to first, because you trust the NHS. I don’t know an individual physically access the site why but you do! Because that’s what they’re (geographical distance may be a problem as may building or workstation design)? For This statement is interesting for several reasons. example, preliminary analysis suggests that First, despite widespread publicity about such home access does not in and of itself confer online services by the NHS, this participant advantage. This depends on the would-be-user’s remained unaware of such services. Second, the relationship to the home and the social relations statement would suggest that her search skills in the household more generally. Thus, one were relatively poor – given her trust in the NHS, one would expect that she had looked for cannot access her home PC because her son the NHS sites but had failed to find them (this is dominates it and she is forced to do all her being followed up in a subsequent interview). Internet searching at work. The confidential Third, the trust she displays in the NHS is, nature of the searching means that she often itself, fairly typical amongst our sample of mid- stays late at work and works in her office alone. life women and this may have significance for Different kinds of access issues arise when it their use of information sources and media other comes to the source of information. Literacy and educational experience may be of primary services. Indeed, several described themselves importance here with particular difficulties and their relationship to their GPs in ways that associated with judging the validity and suggested a ‘generational effect’. For example, authority claims made by different information one described herself as part of ‘the generation sources. When it comes to the information where you always thought the doctors were sort media, access issues concern the possession or of gods’ (Respondent 19). Another suggested acquisition of the skills, and knowledge that looking up information to share with the GP necessary to use particular media, ranging from would be ‘like ‘telling your granny how to suck basic literacy through computer literacy to high level web-searching skills. Our research is The final issue we seek to address through our throwing light on the limits to access to quality research is that of ‘access’, linked, as it so often health information by paying attention to the is, to debates about social inclusion and experience of participants across all these exclusion. Social exclusion is often thought to elements. For example, very few participants be overcome by improving access, to seemed aware of the source of the information information in general or to particular they were accessing, especially when the information media such as the Internet. But what does access really mean and how can we concerned about this but others deemed the determine whether access has really been Internet itself to be a source, and a trustworthy improved for particular individuals and groups? Our own approach to ‘access’ seeks to implications arising from these types of findings distinguish between the following elements: which we will continue to analyse. In particular, there appears to be a real need for information the site of access – the geographical place literacy skills to be developed more widely so or location where information is accessed; that the public are able to be aware of the 88 Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 relevance of information sources, to ask critical questions about information they access and to Akrich, M. “The de-scription of technical objects” make judgements about the validity and quality in TuhƒvtÃUrpu‚y‚t’7ˆvyqvtÃT‚pvr‡’)ÃT‡ˆqvr†Ã of the information accessed. In short, becoming vÃT‚pv‚‡rpuvphyÃ8uhtrÃW. Bijker and J. Law a ‘reflexive consumer’ or an ‘informed patient’ (eds.) MIT Press, Cambridge, MA, 1992, pp. 205- requires a degree of social learning, a 24. informational and technological developments themselves. Annandale, E. and Hunt, K. Brqr…ÃDr„ˆhyv‡vr†ÃvÃ Crhy‡u, Open University Press, Buckingham, 2000. In this paper, we have described an on-going project that seeks to understand more about the Bakardjieva, M. “Studying ICT users: Between use of the Internet for accessing health ‘technography’ and ethnography,” Paper information by members of the public. We first presented at The European Association for the criticise the technological determinism found in many policy and academic texts on this subject, Conference, York University, July 31- August 3, particularly those that suggest that the Internet information and empowerment, leading to the Beck, U. Sv†xÃT‚pvr‡’, Sage, London, 1992. development of a new social identity: the ‘informed patient’ or ‘reflexive consumer’. We Bijker, W., Hughes, T., and Pinch, T. (eds.) Uurà T‚pvhyÃ8‚†‡…ˆp‡v‚Ã‚sÃUrpu‚y‚tvphyÃT’†‡r€† enabling us to go beyond such deterministic frameworks to map out a more complex picture of both information handling and Internet use. We have suggested that our longitudinal design Burrows, R., Nettleton, S., Pleace, N., Loader, B., is enabling us to explore the changing practices and Muncer, S. "Virtual community care? Social associated with both access to, and policy and the emergence of computer mediated communication of health information as new social support," Ds‚…€h‡v‚Ã8‚€€ˆvph‡v‚Ãhqà information sources and media become T‚pvr‡’ (3:1), 2000, pp. 95-121. available to users. Our longitudinal design is also enabling us to observe change and Bury, M. Crhy‡uÃhqÃvyyr††ÃvÃhÃpuhtvtƂpvr‡’, development in user identities over time. Routledge, London, 1997. Through this process, we should be able to identify more clearly than ever before the Eysenbach, G. "Consumer health informatics," factors that facilitate and/or inhibit the 7HE (320:7251), 2000, pp. 1713. patients/consumers and the significance of Eysenbach, G. “Empirical studies assessing the different information sources and media in this quality of health information for consumers on the process, in order to produce a more nuanced World Wide Web: A systematic review,” E6H6 understanding of the relationship between (287), 2002, pp. 2691-2700. information, the Internet and empowerment in late modernity.
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Ferguson, T. "Health online and the empowered medical consumer," E‚ˆ…hyÂsÃRˆhyv‡’à We are grateful to the UK Economic and Social D€ƒ…‚‰r€r‡ (23:5), 1997, pp. 251-257. Research Council and the Medical Research Council for financial support under their joint Giddens, A. H‚qr…v‡’ÃhqÃTrysDqr‡v‡’. Polity, ‘Innovative Health Technologies’ programme Scandinavian Journal of Information Systems, 2002, 14(2): 79-90 89 Hardey, M. "Doctor in the house: The Internet as Pinkowish, M.D., Allen, A., Frisse, M.E., and a source of lay health knowledge and the Osherhoff, J.A. "The internet in medicine: an challenge of expertise," T‚pv‚y‚t’ÂsÃCrhy‡uÃhqà update", Qh‡vr‡Ã8h…r (33:1), 1999, pp. 30-39. Schiller, H. Ds‚…€h‡v‚ÃDr„ˆhyv‡’, Routledge, Health Education Authority, Hˆy‡v€rqvhÃà D‡r…hp‡vtÃs‚…ÃCrhy‡u, Health Education Authority, Silverstone, R. and Hirsch, E. (eds.) 8‚†ˆ€vtà Urpu‚y‚tvr†)ÃHrqvhÃhqÃDs‚…€h‡v‚ÃvÃ9‚€r†‡vpà Independent Newspaper, "A new epidemic is terrorising our GPs: Internet print out syndrome," Thomas, G. and Wyatt, S. "Shaping cyberspace - interpreting and transforming the internet," Lie, M. and Sørensen, K. H. (eds.) Hhxvtà Sr†rh…puÃQ‚yvp’Ã28:7), 1999, pp. 681-98. Urpu‚y‚t’ÃPˆ…ÃP4Ã9‚€r†‡vph‡vtÃUrpu‚y‚t’à v‡‚Ã@‰r…’qh’ÃGvsr, Scandinavian University Thomas, G. and Wyatt, S. "Access is not the only problem: using and controlling the Internet," in Urpu‚y‚t’ÃhqÃDr„ˆhyv‡’)ÃRˆr†‡v‚vtÇurà Lupton, D. "Foucault and the medicalisation Ds‚…€h‡v‚ÃT‚pvr‡’, S. Wyatt, F. Henwood, N. critique," in A‚ˆphˆy‡ÃCrhy‡uÃhqÃHrqvpvr A. Miller, and P. Senker (eds.) Routledge, London, Peterson and R. Bunton (eds.), Routledge, Woolgar, S. "Configuring the user: the case of Mackenzie, D., and Wajcman, J. (eds.) UurÃT‚pvhyà usability trials," in 6ÃT‚pv‚y‚t’ÂsÃH‚†‡r…†à TuhƒvtÂsÃUrpu‚y‚t’, Open University Press, @††h’†Ã‚ÃQ‚r…ÃUrpu‚y‚t’ÃhqÃ9‚€vh‡v‚, J. Law (ed.), Routledge, London, 1991, pp. 58-99. NHS Executive, Ds‚…€h‡v‚Ãs‚…ÃCrhy‡u)Ã6Ã Wyatt, S. Hˆy‡v€rqvhÃhqÃD8U†ÃSr†rh…puÃSr‰vr)à Ds‚…€h‡v‚ÃT‡…h‡rt’Ãs‚…ÇurÃH‚qr…ÃICTà (('ñà 9v†hq‰h‡htrqWˆyr…hiyrÃB…‚ˆƒ†, Health !$, Department of Health, London, 1998. Pastore, M. (a) "The world's online populations", Wyatt, S., Henwood, F., Miller, N., and Senker, P. Online at: http://cyberatlas.internet.com/ (eds.) Urpu‚y‚t’ÃhqÃDr„ˆhyv‡’)ÃRˆr†‡v‚vtà ‡urÃDs‚…€h‡v‚ÃT‚pvr‡’, Routledge, London, Pastore, M. (b) "Healthcare: online health consumers more proactive about healthcare", Online at: http://cyberatlas.internet.com/

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