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1 Allison Jones 310268141
Allison Jones
Patient Advocates in the Internet Age:a threat to traditional notions of authority in health care? Abstract
The Internet, with its many modes of publication, has facilitated the growth of high profile patientadvocates by giving them a powerful platform from which to be heard. Their success in garnering a sizableaudience of chronic health sufferers is playing a central role in challenging traditional notions of authorityin the health care field.This paper will specifically look at the example of thyroid disease to demonstrate how the more prominentpatient advocates make use of these publication methods and how this has cemented their position as anew form of authority in the health care arena. Research including a review of relevant academic researchan
d study of advocates’ blogs, websites and
message boards has provided the insights and evidence forthis paper.By looking at the cultural and technological context which has given rise to this development, this paperseeks to demonstrate that the patient advocate is a new form of authority, challenging traditional notionsof authority in health care by harnessing publication methods on the Internet to speak to and activelyengage with an audience. Medical authority will be defined for this purpose using a philosophical andsociological framework.This paper contributes to the body of related existing academic literature which has examined the impactof the Internet on traditional models of health care. By specifically focusing on the examples of patientadvocates in the area of thyroid disease, this paper will demonstrate that traditional notions of authority inhealth care are being challenged.
Keywords: Internet, authority, patient advocate, health care, medical, thyroid, doctor.
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Introduction
Countless website pages dedicated to health. Blogs, Twitter accounts, Facebook groups, online petitions,radio interviews and message boards. Major health reform in the US and Australia. A substantial rise inchronic illness rates
1
. Shortages of doctors, criticism of Big Pharma and medical insurance companies.Masses of information and mis-information.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, challengetraditional 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 communicationtechnology in the developed world, medical sociologist Marie Haug identified a trend of de-professionalisation of those working in the medical field in post-industrial society largely due to technologyopening up access to information. She argued that this came about as a result of technologicaladvancement 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 usersalike 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 health-related information and thatof those within a certain segment (who desire the greatest control in their health care), slightly moreprefer to get their health information from the web (46%) rather than from their doctor (45%) (Von Knoopet 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 healthinformation (regardless of whether they have a chronic disease or not). However, 86% of the respondentsfrom the most recent survey are also still getting this information from a health professional. Healthinformation and the access to it is just one of the many factors at play in the shifting landscape of healthcare and the construction of authority.This paper will look at the social and technological context in which patient advocates have come in toexistence and the factors driving their rise to prominence. The focus of this paper is on the United States
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Data from the Centres for Disease Control and Prevention states that about 133 million Americans
—
nearly 1 in 2adults
—
live with at least one chronic illness:http://www.cdc.gov/chronicdisease/resources/publications/AAG/pdf/chronic.pdf
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owing to the majority of existing research and literature originating there. However, the content is alsoapplicable in most instances to other developed nations, due to the global nature of the Internet andsimilar cultural and medical constructs.Of key concern to this paper is the impact of the patient advocates on the traditional notions of authority
–
are they a replacement for more traditional figures of authority or are they complementary? How do theyoperate and how is their impact felt? Specifically, the paper will look at the example of prominent patientadvocates working in the area of thyroid disease to illustrate how traditional notions of authority are beingchallenged. Research, including a review of relevant academic research and study of advoca
tes’ 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 onnumerous factors: knowledge, training or technical competence, access to information, clinical experience,qualifications and legal authority (for example to 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 doctor-patient 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 19
th
century that medicalcompetence 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 characterizedby the populist notion of ‘every man his own physician’“(Segal, 2009:
p.363). Requiring a prescription formedication is quite a recent development, only coming about well into the 20
th
century (Segal, 2009).
The democratisation of medical power
Access and use of information has had substantial coverage in the literature and undoubtedly plays afundamental role in the changing nature of the doctor-patient relationship. Types of health or medicalinformation can include: scientific research papers, symptom lists, treatment protocols, medication sideeffects and usage guidelines.
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