journal of digital research & publishing - The Sydney eScholarship ...

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
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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.
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