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
In the United Kingdom, the most prominent patient advocate is Sheila Turner who founded
Thyroid Patient Advocacy UK (TPA UK ­ http://www.tpa­uk.org.uk/). The situation in
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respond to traditional treatment, with National Health Service doctors being ordered not
to prescribe certain medications and common diagnostic testing being refused.
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provided by forum moderators on the Real Thyroid Help message boards. Although the
moderators are not self­described advocates, they are by default since they provide moral
support, maintain “good doctor” lists and disseminate information.
All patient advocates have one important factor in common: they are themselves thyroid
patients who have spent years navigating a complex disease and even more complex
and frustrating medical systems in their respective countries. This imbues them with
authenticity and gravitas in the patient community. Data from the Pew Research study
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making” (Fox and Jones: 2009).
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notions of authority:
}& Authenticity as detailed previously, which leads to trust – a different currency
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}& Specialisation Unlike doctors (even specialists), patient advocates mostly specialise
in one disease type, meaning that in many cases they know more about that disease than
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}& Access to Information Because of their position, advocates often have access to
information that others do not, for example research papers, policy papers, articles by
doctors.
}& Information dissemination Advocates often publish quite complex information in
accessible language via their website or blog. Because of their authenticity and the resulting
trust, the often­cited issue of information reliability when it comes to health information
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advocate “expert” before it is published.
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