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1 P M J O U R N A L O F D I G I T A L R ESEARCH & P UBLISHING These are just some of the factors intersecting in recent years, setting the scene for a rise in what are known as ‘patient advocates’ in the health care space. The patient advocates of concern to this paper act for thousands of people, rather than for the individual, and most commonly ‘specialise’ in one type of illness. They generate a substantial following with their command of Internet publication modes, challenge traditional notions of medical authority and they are not going away anytime soon. As far back (relatively speaking) as 1973, long before the Internet became the pervasive communication technology in the developed world, medical sociologist Marie Haug $8%"6$4%8& 3& 6>%"8& 7D& 8%]'>7D%**$7"3#$*36$7"& 7D& 6+7*%& G7>H$",& $"& 6+%& 0%8$53#& 4%#8& $"& postindustrial society largely due to technology opening up access to information. She argued that this came about as a result of technological advancement and that the de professionalisation is characterised by loss of ‘‘their monopoly over knowledge, public belief in their service ethos, and expectations of work autonomy and authority over the client’’ (1973, p. 197). More recently, survey data from the US clearly demonstrates that both patients and general Internet users alike are accessing the Internet in large numbers for health information. A 2003 study (Von Knoop, Lovich, Silverstein, & Tutty,2003) found that 80% of all patients go online for healthrelated information and that of those within a certain segment (who desire the greatest control in their health care), slightly more prefer to get their health information from the web (46%) rather than from their doctor (45%) (Von Knoop et al., 2003). More recent research by The Pew Internet and American Life Project (Fox and Jones: 2009) reports that 74% of American adults use the Internet and that 83% of them look online for health information (regardless of whether they have a chronic disease or not). However, 86% of the respondents from the most recent survey are also still getting this information from a health professional. Health information and the access to it is just one of the many factors at play in the shifting landscape of health care and the construction of authority. This paper will look at the social and technological context in which patient advocates have come in to existence and the factors driving their rise to prominence. The focus of this paper is on the United States owing to the majority of existing research and literature originating there. However, the content is also applicable in most instances to other developed nations, due to the global nature of the Internet and similar cultural and medical constructs. 138
1 P M J O U R N A L O F D I G I T A L R ESEARCH & P UBLISHING Of key concern to this paper is the impact of the patient advocates on the traditional "76$7"*&7D&3(6+7>$69&c&3>%&6+%9&3&>%'#35%0%"6&D7>&07>%&6>38$6$7"3#&4,(>%*&7D&3(6+7>$69&7>& 3>%&6+%9&570'#%0%"63>9p&&j7G&87&6+%9&7'%>36%&3"8&+7G&$*&6+%$>&$0'356&D%#6p&A'%5$453##9S& the paper will look at the example of prominent patient advocates working in the area of thyroid disease to illustrate how traditional notions of authority are being challenged. Research, including a review of relevant academic research and study of advocates’ blogs, websites and message boards, has provided the insights for this paper. Traditional Notions of Authority A study of the relevant literature reveals that the notion of authority in the medical profession is based on numerous factors: knowledge, training or technical competence, 355%**&67&$"D7>036$7"S&5#$"$53#&%P'%>$%"5%S&h(3#$4536$7"*&3"8&#%,3#&3(6+7>$69&.D7>&%P30'#%&67& write prescriptions or perform operations) (Makoul: 1998, Blumenthal: 2002, Gesler:1999). Certain theorists have posited that these factors have eventuated in a particular dominant type of doctorpatient relationship that is variously described as paternalistic (Engel:1977), authoritarian, asymmetric (Eysenbach and Jadad: 2001), with the resulting relationship resulting in a situation according to The New York Times where “the doctor gives orders and the patient obeys” (Hafner: 1998). Citing Foucault amongst others, Segal notes that it wasn’t until the end of the 19th century that medical competence was removed from patients and placed in the hands of licensed practitioners due to a rise in certain types of technologies. Previously, Segal states that “Eighteenth century medicine was characterized by the populist notion of ‘every man his own physician’“(Segal, 2009: p.363). Requiring a prescription for medication is quite a recent development, only coming about well into the 20th century (Segal, 2009). The democratisation of medical power Access and use of information has had substantial coverage in the literature and undoubtedly plays a fundamental role in the changing nature of the doctorpatient >%#36$7"*+$'M& B9'%*& 7D& +%3#6+& 7>& 0%8$53#& $"D7>036$7"& 53"& $"5#(8%-& *5$%"6$45& >%*%3>5+& papers, symptom lists, treatment protocols, medication side effects and usage guidelines. A5+7#3>*&+3I%&$8%"6$4%8&6+36&D3567>*&*(5+&3*&57"*(0%>$*0&+3I%&*%%"&>3'$8&5+3",%*&67& health care services (Beisecker and Beisecker, 1993: Blumenthal, 1996). This consumerism 139
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