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Consumption of the WWW for Medical Information:

What U.C. Berkeley Students Make of It

From World Wide Web chat rooms on fertility to extensive allopathic medical informational Web sites as well as alternative medicine Web sites, medical information on the World Wide Web is expanding dramatically. How are people using this information, and what does easily accessible WWW medical information suggest about consumption defined here as de Certeau’s ‘ways of using the products imposed by a dominant economic order’[1] in an age of digital technology is the focus of this paper.

This paper examines some everyday practices involved in the use or consumption of the WWW for information within the context of medical and Internet technologies’ discourses. In this instance, I look at the way four UC Berkeley students have used the World Wide Web for medical information. I argue that the medical and health ‘cyberspace’ of the WWW with its fixed Web site addresses and its address-oriented email system, for example, is analogous to de Certeau’s conception of ‘place,’[2] but it is new in the way it compresses time / space and delinks, for example, Web site with physical location, and email addressee from the physical address. I also argue that everyday practices of finding and utilizing medical information on the WWW constitute a new kind of space, analogous to de Certeau’s conception of ‘space,’[3] where consumption of medical information shapes new ways of ‘making do’[4] in response to medical information on the WWW and in response to technorationalization of medical practice in general. In using a spatialization trope, I want to highlight the way users’ everyday Web surfing practices reflect ways of consuming information that change users’ relationship to both the body’s health concerns as well as to ‘strategies’[5] of medicine. As a recently developed ‘tactic,’[6] surfing the WWW for medical information makes possible the mapping of new everyday practices, new landscapes within cyberspace, in response to ever more complex grids of control which medical information on the WWW represents. This paper attempts to identify some of these landscapes.

For de Certeau, “place” defines a location, which is part of a society of control, which in turn excels at technocratic rationalizations in its modern form. I want to argue that the WWW is an extension of technorationally controlled places and that Web site addresses and email addresses, for example, exemplify a societal tendency toward constructing grids of control in ways that give new definitions to place. Place in cyberspace, as defined by domain addresses,[7] is now not linked to physical space; it exists in a time space compression yet retains stable order “with which elements are distribute in relationship of coexistence.”[8] Information with fixed addresses (WWW Domain Name System) can be accessed from terminals anywhere on the World Wide Web. Medical and health information Websites as ‘cyberplaces,’ then, take on the characteristics of this new production of place and employ the calculus of force-relationships[9] of ‘strategy’ under the auspices of scientific, economic and state institutions.

De Certeau’s conception of consumption ‘space’ takes into consideration direction, time-variables and velocities. In investigating the difference between place and space in the city, he walks down from the 110^th floor of the World Trade building and observes another spatiality “foreign to the “geometrical” or geographical space of visual, panoptic, or theoretical constructions”[10] that make up cities. This different spatiality -- “an ‘anthropological,’ poetic, or mythic experience of space”[11] -- involves a specific set of operations and refers to an “opaque and blind mobility. . .  where . . . a migrational, or metaphorical, city thus slips into the clear text of the planned and readable city.”[12]  I suggest that searching for and consuming medical information on the WWW involves similar operations of shaping space among ‘cyberplaces.’ Surfing the WWW for medical information involves negotiating new spatial and informational fields where ‘making do’ creates new everyday WWW practices.

Consumption, for de Certeau, involves ‘tactics’ characterized by poaching, ruses, quasi-invisibility, and clandestine nature, which display themselves, not through producing their own products, but rather through an art of using the products imposed on it.[13] This study examines how some U.C. Berkeley students use the WWW for medical information to respond to their health concerns. I consider the ways students look for information on the WWW, why they do so, what role cost plays, what they found and the way they interpreted the significance of this information[14] in terms of de Certeau’s concept of everyday practices. Searching and finding free WWW health information in many different sites enabled consumption of medical information and constituted poaching tactics, in response to both physicians and medicine’s control of information. This paper not only begins to observe everyday practices associated with surfing the World Wide Web for medical information, but also provides examples on which to construct a conception of surfing ‘tactics,’ of everyday practices on the WWW, in response to medicine’s ‘strategies’ of control.

While this paper is not about individuals,[15] this paper incorporates users’ voices as ethnographic examples to show how these cyberlandscapes of WWW medical and health information everyday practices are shaped. The use of voices in this paper highlights de Certeau’s emphasis on the act of talking, especially enunciation, which he distinguishes from the system of language. I want to suggest that surfing is similar to speaking (la parole), and not to the language system (la langue), in that surfers/health seekers "reappropriate" the cyberspace of the WWW designers and planners to their own interests.[16] “Hearing” the health seekers voices in this paper accentuates the significance of voice in response to WWW regimes of control.

Use of the World Wide Web for Medical Information

Once the images broadcast by television and the time spent in front of the TV set have been analyzed, it remains to be asked what the consumer makes of these images and during these hours. The thousands of people who buy a health magazine, the customers in a supermarket, the practitioners of urban space, the consumers of newspaper stories and legends – what do they make of what they “absorb,” receive, and pay for? What do they do with it. The enigma of the consumer sphinx.[17]

Compared to publicly available medical information available in the U.S. just, for example, five years ago, WWW user’s today (2000) can access extensive amounts and varieties of health information.[18] In addition to the sheer volume of information, ease of access to it has allowed users to find medical information with immunity, but perhaps not impunity, such as adverse or idiosyncratic reactions to modalities. While users can visit enormous numbers of medical and health ‘places’ on the WWW -- e.g. from unedited Web sites (coded in hypertext markup language, HTML) whose source or quality is not known to elaborate, extensive Web sites with very current, credible medical information, as well as chat rooms (using interactivity-enabling JavaScript) where users can ‘chat’ user- to- user to exchange information, ask questions, and share strategies and treatments -- the way this information is used suggests new everyday practices. By examining everday practices of Web surfers seeking medical information, this paper attempts to highlight some voices of de Certeau’s ‘consumer-sphinx’ in response to medical information on the WWW.

While extensive quantitative data exists to suggest which WWW sites people in the US are visiting, very little qualitative data exists to show how people are using medical information on the WWW or the extent to which people utilize this WWW health information in their own lives.[19] In the main part of this paper, I want to examine how consumers say they are using medical information on the WWW.

The informants interviewed reported consuming medical information on the WWW for several reasons. In addition, they said that they wouldn’t have sought this information before the World Wide Web’s advent. While free medical information isn’t unique to the WWW, the informants reported that medical information on the WWW makes it easy and practical and hence consumption occurs -- extensively. While libraries, support groups and physician’s desk references have existed for a long time, the WWW’s convenience seems to have altered the way medical information is consumed.

In the same way that de Certeau highlights particular kinds of everyday practices – reading, talking, walking, dwelling, moving about, shopping, cooking, etc.[20] – as engendering ‘metis,’[21] or clever tricks, joyful discoveries, knowing how to get away with things, this paper will examine some specific kinds of consumption of medical information on the WWW in terms of what health seeking web surfers siezed “on the wing.”[22] The informants whom I interviewed reported using the Web for:

•          Convenience
•          Wealth of information
•          Self-diagnosis
•          Alternative medicine Web site seeking
•          Finding 2^nd opinions, challenging medical practitioners
•          Anonymity
•          Creating online dialogue to share information that any single physician might not have
•          Changing patient / physician social dynamic
•          Finding medical information quickly

As everyday practices, these uses reflect tactics arising as a consequence of the development of medical information on the World Wide Web.

Methodology

De Certeau privileges the everyday practices through which those who use spaces make them into meaningful places. I adopt this approach in analyzing these interviews.

In this study, I interviewed students in a Summer 2000 Medical Anthropology class at the University of California Berkeley who volunteered that they had used the World Wide Web for health information and/or care. The four informants, two men and two women, from diverse ethnic and ‘racial’ backgrounds self-selected. As a group, they were highly educated, self motivated, middle to upper middle class socio-economic status, of varied ethnic and racial backgrounds. Out of a class of about 20 students, they volunteered when asked in class “Who has used the Web for health information?” They all had extensive access to computers, often with high-speed Internet connections, middle to upper middle-class socioeconomic status, and were highly educated Americans attending Cal. The inherent limitations in the small number of interviews and informants, and the fact that we were all in the same medical anthropology class obviously circumscribe the findings. As an attempt, however, to begin to examine consumption of the World Wide Web for medical information in terms of everyday practices in cyberspace, the information gleaned from the interviews helps to highlight some key issues.

Informants in this study visited many different kinds of sites on the World Wide Web, ranging from ones they trusted because of the organization that produced them, such as UC Berkeley’s Health Sciences Information Service Page or the National Institute of Health’s “Medline Plus,” to online communities for ongoing online discussions and shared forums, which one informant described as “this incredible market place and exchange of ideas and technologies,” to alternative therapy sites and smaller group sites, often promoting a special interest. In selecting between them and combining information from particular sites, they both shaped a sense of space on the WWW particular to their “ways of operating,”[23] as well as consumed information that had the potential to, and did in some cases, alter patient / physician social practices.

The small number of informants I interviewed visited 3 main types of WWW information sites when looking for medical information about health problems: 1) Internet listservers for information about infertility, 2) large biomedical/allopathic Web sites, such as Berkeley’s Health Science Information Service and the National Institute for Health’s Medline Plus, and 3) assorted alternative health Web.

In one sense, the health and medical sites the informants visited were all ‘free’ for the user; no money was exchanged. “Shopping” for free sites reflects de Certeau’s shopping tactics for finding bargains, exploiting sales and shaping unique practices in relation to economic systems of control. In another way, these sites are not free because they are posted to target customers through advertising, to gain market share and brand their product or name at the expense of the consumer. Taxes pay for governmental and some University medical sites. Patients’ fees ultimately pay for health institution sites. The largest Web site the informants visited, for example, Medline Plus, is paid for by the government. Berkeley Health Science Information Services is also partially state financed through California’s education budget. The alternative medicine sites were all paid for by small businesses and the fertility listserv was also a small business.

Informants

Anderson and Sharrock[24] observe that there is a tendency in the 'radical' analytical approach to see readers as 'witless and uncritical'. While 'radical' (or Marxist) approaches, tend to emphasize media texts, as opposed to an analysis of the way readers receive those texts, de Certeau, in contrast, emphasizes that “it's always a good thing to remember that one shouldn't think of people as idiots”[25] This paper begins to address how people are using the WWW for medical information by examining the informants’ interviews and the way consumption recodes the products of medical regimes. All four informants, whom I shall call Tracy, Phil, Carol and Steve, used the Web extensively for health conditions and illness. These four examples of everyday practices begin to suggest how consumption of medical information may shape ‘space’ on the World Wide Web.

Tracy

Tracy used the Web to successfully self diagnose and seek a remedy based on this information. She began to have headaches about two years ago, which started fairly suddenly. She had always been healthy, so the headaches surprised her. She went pretty directly to the Web for information. “It was the obvious thing to do” because it was at hand, free and easy to access, she said. She can’t remember exactly what sites she visited but she visited many. She started to search the Web only a day or so after she started to get the headaches.

After finding a site on headaches on the World Wide Web, which presented information that seemed credible and relevant, she came to the conclusion that her headaches were cluster headaches probably caused by impacted wisdom teeth. She trusted this information from the Web because of its amount and scope; the way it was presented gave her a range of options. “The site listed something like 15 different kinds of headaches, their symptoms and causes.”[26]  Using this information, “I went with what sounded right about what I felt.”[27]  Tracy diagnosed herself using information from the Web and consequently saw a dentist. She could have misdiagnosed herself, but she didn’t. Surfing cyberspace to seek and find medical information, by selecting between many sites, helped her diagnose her condition.

She went to a dentist, who affirmed what Tracy thought and recommended that she go to an oral surgeon. The oral surgeon said Tracy had two impacted wisdom teeth, which were putting pressure on a nerve and causing swelling, as the Web site indicated. The oral surgeon removed the teeth and the headaches went away.

Tracy was pleased to use the World Wide Web to find information, which she then used to seek a solution to her situation. The World Wide Web was instrumental in helping remedy her condition, in a way that no other resource was for her. It enabled the research and provided the information for the next step.

Tracy diagnosed herself using the WWW. Historically, the power of a physician in relation to his or her patient in the discourse of medicine has rested, in part, with the ability to use a body of knowledge to diagnose the consumer. The physician's knowledge, rooted in the discourse of medicine, produced diagnoses as a medical product, part of a calculus of force-relation, circumscribed as ‘proper.’ Ease of access to medical information on the WWW and to search engines that contribute to finding large amounts of information from multiple allopathic and alternative sources changes this patient - physician dynamic. Tracy's use of medical information on the Web is representative of a new public – WWW medical information consumers -- who through their use of the information on the Web, tactically redeploy medical discourse to their own ends.

Phil

Phil could find neither allopathic therapeutic approaches nor other approaches that provided relief after he twisted an ankle and severely stretched some cartilage four years ago. Surfing the World Wide Web, however, provided a context in which to understand his problem and helped bolster his confidence when he felt disheartened about the intractability of regenerating cartilage, which physicians had diagnosed, he said. Medical information on the Web also gave him ideas for alternative ways to look at the problem that helped him feel less resigned and more positively about his ankle pain. Searching the World Wide Web also gave him something active to do, which was helpful in responding to a seemingly intractable situation. Information from the World Wide Web, which critiqued alternative Web sites, showed him that there was a battle being fought over therapeutic approaches and ideas in cyberspace. After four years of discomfort, his ankle cartilage problem began to lessen of its own accord.

Phil’s symptoms were debilitating and affected his outlook on life for many years. “I can and could walk but it was very painful . . . there was nothing I could do with Western Medicine. So first I was looking up alternative sites [on the World Wide Web] to see what they said about cartilage problems.”[28]  He visited many allopathic specialists and used sites like “Medline” to look up medical papers on the problem, all of which “didn't help very much except to clarify what kind of research there was.”[29]  Using search engines like Yahoo and Alta Vista, he visited alternative MD Web sites like “Ask Dr. Weil,” as well as sites on apitherapy (bee venom therapy), nutritional supplements, glucosamine sulfate, flax seed and other omega-6 oils, body working, rolfing, tai chi, chi gung and Web sites that advocated avoiding caffeine and nicotine.  He looked at everything that is out there, he said. “Arthritis and cartilage problems, osteoarthritis are such a wide spread phenomenon . . . it was really nice to be reminded that it was an open ended question and that nobody had proof and that you couldn't do anything about it and I was still young.”[30]

The Web also, however, exasperated him because a lot of the information was contradictory and a lot of it redundant.

                He didn’t use the Web in place of doctors because his parents, who are both doctors, encouraged him to go to orthopedic surgeons and orthopedists, which he did exhaustively. He started to consult the World Wide Web at about the same time he saw the doctors.

Phil said his ankle problem was emotionally tied to the wider context of his life at the time, in the sense that it “coincided with a really difficult time in my life where I was trying to root myself and decide what to do in life. And where I, overall, felt a lot more confused compared to years previous to that.”[31]  Web sites, especially alternative sites, he said, were useful for “bolstering my belief that I might be able to do something about it” because it “was flush with a lot of practical suggestions.”  What was important for Phil was not to lose confidence. He tried to consciously affect how he felt about the problem; the Web helped in this process but perhaps only in an ancillary way.

One of the problems with the Web for Phil was its lack of organization, the redundancy of information and the question of quality.

Something that's both helpful and unhelpful is that it is not organized as a whole, so in one way you know that you can look for various conflicting opinions and judge for yourself but also you get a lot of redundancy and you don't really know the quality of what you are looking at. You know if it's “Medline,” you're getting high quality allopathic perspectives, but a lot of the domestic, small group Web sites  - you never really know the quality of the information you are getting.[32] 

The Web did help Phil, he said, by putting not only his condition in perspective and showing him possibilities but also, when some sites criticized other sites, the critical Web sites helped put alternative Web sites in perspective. For example, some medical Web sites strongly panned bee venom therapy Web sites. By surfing the Web Phil easily accessed 2^nd opinions and was able to contrast many different alternative approaches to allopathic approaches.

Phil went to the Web because medical information is convenient; time and space are compressed. “You don't have to go looking through some library system.”[33]  Doing his own research on the Web gave Phil “a little sense of empowerment about these issues that pertained to my own body and I could at least get some perspective to evaluate whatever doctors or anyone else was telling me and also choose what doctor I wanted to see professionally.”[34]  He started to use the Web when he got really exasperated. Such information helped him to understand where the doctors’ perspective – what they say – comes from and the research done on cartilage regrowth. For Phil, information from the Web fills a gap in terms of what people don’t know and could “better fill that gap if it was better organized information - more sort of cross-linked between allopathic and [alternative] where they don't try to melt the two together but they retain their different sides but you get a comparison on the same Web site or something.”[35] Consumption of WWW medical information also enabled comparative evaluations of physicians and therapies.

                Phil observed how the Web is, in some ways, a tool, which benefits the privileged. He noted the parallel between the privilege trying alternative medicine and of accessing the World Wide Web.

On the access side of things, especially with alternative medicine, although it seems as though alternative medicine is changing, it's predominantly popular among more privileged people who can afford to self medicate and who have the time and the education to look into these things. And the Web is the same thing so it dovetails pretty nicely for that. So it's hard to judge race in an electronic medium but I guess you could say it's pretty white.[36] 

Phil used the Web to seek out allopathic and alternative information to help with his ankle problem. While nothing seemed to help the problem improve, the Web’s many perspectives did help him keep his confidence. Everyday practices of Web surfing enable and make convenient consumption tactics including doctor evaluation, information comparison and synthesis of information from many sites.

Carol

Everyday Web surfing practices make tactical dialogue possible in response to medical regimes. Tactical dialogue, in this instance, refers to conversations which enable consumption through conversation. Online dialogue through chat rooms and bulletin boards also contribute to shaping community, which Carol found very important. While seeing the Web as a fictive community and not helpful for her condition, Carol did use an online listserv community on infertility as a resource. When Carol was originally trying to have a baby using a sperm donor, she “went looking for resources because it's not the kind of thing you're disclosing to everybody, so the folks at the sperm bank recommended that people go onto the Web because there's a huge cyber community of people interested . . . And I was looking for a support group, so I went in and entered the key word, "artificial insemination."   Although she conceived fairly quickly, she continues to follow her group “up to this day because it’s a very interesting place to go and watch.”  Because it’s “very much like this incredible market place and exchange of ideas and technologies,” it’s potentially very useful for women who are seeking emotional support or information about infertility. In his discussion of tactics (such as reading, writing, talking, etc.), De Certeau does not specifically examine the tactic of  community formation which Carol found was constituted by online dialogue consumption.

Carol found comfort through the infertility Web site because it showed her 1) that there were so many children conceived that way, 2) that she could be invisible and do something that was not the norm, and at that point she still hadn’t decided whether to tell her family or not, 3) that she wasn’t alone, and 4) her seeing people write that they were conceived through artificial insemination[37] -- and devastated when they didn’t know -- showed her that discussing it would benefit her son. Because the online discussions were so clear, “it did change my beliefs about these things.”[38]

She used the World Wide Web concurrently with her midwife. While she didn’t trust the information in the infertility community outright -- there was a lot of competing information in doctor advice for example -- she “saw it as a place where people were trying to sort this stuff out and in the end truth got generated or knowledge got generated just in this process but I'm not really sure it's the right information. It's just the consensus.”[39] 

Carol personally used the health information on the Web only to a small degree, “to find out the best ways to find out when I was ovulating because there was a lot of information from other women about what they did and how they did it and what worked best for them.”[40]  However, in her role as an observer, a skeptic and disinclined to participate, she felt mostly alienated in relation to the community. When she got pregnant she participated to say that it worked:

I did participate when I got pregnant because I just felt like there were so many people who were participating for so long who felt like this wouldn't work so I felt as a fairly silent participant that I had an obligation to say it works.[41] 

From the very first time that Carol knew she wanted to have a child, she used the World Wide Web, first to find a sperm bank, then to follow an online infertility support community. In a metaphorical sense, she used the World Wide Web as the means to conceive a child. She continued using it because “the information that different sperm banks tell you and don’t tell you on the Web” stimulated her interest in the whole process of infertility and artificial insemination.

Carol described this infertility discussion group as overwhelmingly white. “That just comes across, interestingly, I could be surprised, through memos and lingo, life experiences they talk about . . . They want someone as close to their husbands as they can possibly find.”  Fertility regimes are expensive, about $10,000 a cycle. Carol said social class also played a role in the discussions “in the sense that there were some really sad stories from people would write in and say "I'm going to drop off the list" because this is the last time I can try. I've had each medicated cycle - because a lot of these women are using all these fertility drugs.”[42] 

Steve

Consumption of medical information on the Web through surfing is changing strategies of medicine. In this example of everyday practice, ‘medicine’ responds to Web surfing tactics with its own tactic: starting a Web site and instructing students to redirect patients to Web sites that physicians suggest. As a medical student, Steve was advised by his professors to become familiar with the Web because they said patients are bringing medical information from it with which doctors were sometimes unfamiliar or which contradicted what the doctors had told them. Partially as a response, the medical program he is in at U.C. Berkeley has actually started a Web site of their own - Health Sciences Information Service – which anyone can link to through Berkeley’s library Web page. Students and others from his program are creating the site by posting links to Web sites they find useful. The reason Steve’s professors have encouraged the students to become familiar with the Internet is so they, as future doctors, will know some sites they can recommend to patients and might say to a patient: “Well, you know, the site you looked up has information that is different than what I have been taught in my medical education. I would suggest that you look up the same information at this site.”[43] 

Steve also uses the Web extensively for personal conditions. He typically searches with “Askjeeves.com” or Alta Vista and generally chooses the most well developed site with the most links to other sites. “And if it’s associated with the NIH (National Institute for Health) or the CDC (Center for Disease Control), I go there first because it seems as if it’s going to be the most accurate or they’re not going to put stuff that they don’t know about for sure like oftentimes you find sites put up by people . . . whereas I wanted the facts.”[44]  Credibility was Steve’s main criterion.

Although he has ample access to medical books and information, he prefers the Web for information on his own conditions because the information he has found is more relevant, less detailed, not too technical, easier to access, and often offers a simplified, jargon-free overview. Also the pictures are simpler than in textbooks and he doesn’t get more information than what he wants, he said. The practice of medical students choosing medical information for personal consumption from the Web instead of books or doctors highlights the simplicity and anonymity available online. 

Well, it’s not that I had problems with access to information. I had books but usually the books have a lot more jargon and there’s a lot more details. They have information on the Web that anybody can read, more important information for someone who isn’t necessarily looking to get a greater medical knowledge for things but are just trying to understand what is relevant to them.[45]

As an everyday practice this simplified information is preferred to more complex medical information and to face to face contact with physicians by medical students.

Because Steve is a medical student, he said he is also able to discern accuracy on the Web and chooses Web sites accordingly. He has also gone to the Web for information because he couldn’t find it in books.

Steve has used the WWW when he didn’t have insurance and wanted to find various free testing sites. He has also found information from the Web useful because he can remain anonymous.  In addition he has used it to find out about nutrition, something which isn’t taught in medical school.

He has trusted information from the Web, especially if well organized and from a credible source and when it seems like the Web designers had put a lot of time into the site and included pictures, references and citations. Among the sites he has found most helpful are the “Patient Guide to  . . .” series he found through “AskJeeves.com,” UC Berkeley’s Health Science Information Service page with its many links, including “Doctor’s Guide to the Internet,” “Cliniweb,” and “Virtual Hospital,” “JAMA,” and “The New England Journal of Medicine.”  

Discussion

A spatial story is in its minimal degree a spoken language, that is, a linguistic system that distributes places insofar as it is articulated by an “enunciatory focalization,” by an act of practicing it. . . . it will suffice here to recall that, in this focalizing enunciation, space appears once more as a practiced place.[46]

Through everyday surfing of the World Wide Web, the informants I interviewed consume and shape responses to their personal illness or medical conditions by gathering information in ways they had never used before, changing the consumer / physician relationship and shaping everyday practices in cyberspace. In addition, the cultural means by which the medical information is mediated (the WWW), and how they get it (via search engines, online communities, hyperlinks, and medical Web sites which can look for information from around the world), has changed. Many sources of high quality medical information, advice, opinions, and basic research are easily found over the Web whereas consumers would neither seek nor consume them in libraries, for example. In de Certeau’s theoretical schema World Wide Web sites acting as ‘places’ and Web sites as ‘spaces’ change medical discourse in a way unmediated by a personal physician. For the informants I interviewed, consumption of the World Wide Web potentially gives rise to new tactics and practices with which consumers respond to health conditions while potentially complementing or dwarfing those learned from personal physicians, through a second doctor’s opinion, friends, family, books, education, or otherwise.

The consumer practices examined above take advantage of and resignify medical and health information as a consequence of the World Wide Web. A medical student, Steve, learns from his clinician professors that medical consumers are changing the dynamics of the patient-physician relationship by the tactic of bringing in medical information gathered from the WWW. As a consumer / physician-to-be, he is taught to become familiar with the Web to redirect patients to Web sites which reflect the medical knowledge he has learned as a medical student and to counter information his patients may bring him from the World Wide Web. This same medical student / medical consumer is using information from the Web in preference to his textbooks and in preference to talking to his physician-professors about his own medical conditions. For Carol, online infertility communities generate more first hand, up-to-date knowledge through online dialogue than a one might learn from a doctor. These online communities also make this information available to all participants. For Tracy, a dentist confirms her self-diagnosis, which she learned on the Web. The doctor or physician’s social authority in the clinic, often presumably based on learned knowledge, is undermined or questioned by patients empowered by knowledge gained from the World Wide Web. Patients may have done this to some degree in recent history, but never on the same scale and scope that these informants suggest is happening or may happen. Consumption of medical information on the WWW provides opportunities for everyday practices which resignify information for the consumer and perhaps alter medical strategies.

Convenience and ease of access to the World Wide Web, a decentralized information source, reshapes consumer’s potential ‘spaces’ in response to online medical Website ‘places.’ Consumers have an ever growing body of knowledge from many different sources, which they consume, resignify and use in response to their own maladies and in relation to physicians. By creating these new ‘spaces’ in relation to online ‘places,’ consumption of medical information on the WWW alters social relations between doctor and patient, changes clinical reality, empowers the patient and lessens the significance of the physician as sole bearer of medical information. Doctor’s knowledge of procedures, techniques and many other skills which health care professionals learn are now practiced in the context of a different form of consumption. A multiplicity of opinions gleaned from a worldwide, decentralized network, where anyone can post almost anything and no one is in charge, but where advertising and the potential for revenues is present but not dominant, fundamentally changes the shape of medical information space and shapes physician-patient relationships in respect to information.

While the World Wide Web offers a multiplicity of health perspectives and free medical information, access to this information is limited in many ways, e.g. digital and linguistic divides. Each informant interviewed used the Web extensively and will likely continue to do so for other conditions that arise. Whether consumers do gain more control with more information found on the World Wide Web in relation to the medical calculus of force-relations circumscribed as ‘proper’ or simply become more tangled in a medical system like flies in a Web, so to speak, reflects the way medicine is changing in a digital age. The informants I interviewed seemed to feel tactically empowered by the use of the Web vis a vis health professionals and their own health conditions. The landscape of the Web provides more people with access to knowledge and thereby lessen physicians’ roles as sole proprietors of knowledge in the medical field. The decentralized, anyone can post anything World Wide Web -- at least as far as the everyday practices of informants interviewed here indicated -- offers new opportunities, especially access to information, that engender new consumption tactics.

APPENDIX A

World Wide Web Health Care Interview Questions

July 2000 - UC Berkeley

Question: If you had a medical problem, what were the symptoms or what was the condition?

Question: What did the symptoms mean for you?

Question: How have you used the World Wide Web to help with this problem?

Question: Are you using the World Wide Web in place of doctors? Or alone? Or with an allopathic doctor?

Question: What experience did you have? Alone? With an allopathic doctor?

Question: What role did its cost play?

Question: Have you used it in place of doctors?

Question: Was the World Wide Web helpful?

Question: Why did you use the World Wide Web for health information?

Question: Was it for your own condition or for educational reasons or for what other reasons?

Question: What did you use the health information on the World Wide Web for?

Question: Did you trust the information from the World Wide Web?

Question: Is health information from the World Wide Web a potential substitute for a doctor for you?

Question: What was your experience with a health professional, if you saw one?

Question: For what kind of illnesses?  Illnesses that are hard to diagnose? Or for illnesses which western medicine doesn't have a useful response to?

Question: At what point do you consult the computer?

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