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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 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 6+%&_U&$*&57"*$8%>%8&67&)%&07>%&8$D45(#6&6+3"&$"&76+%>&57("6>$%*&D7>&'36$%"6*&G+7&87&"76& respond to traditional treatment, with National Health Service doctors being ordered not to prescribe certain medications and common diagnostic testing being refused. B+%& #3*6& %P30'#%& 7D& '36$%"6& 38I75359& 7D& 57"5%>"& 67& 6+$*& '3'%>& $*& 3"& ("7D45$3#& D7>0S& 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 $8%"6$4%*&6+36&03"9&`"6%>"%6&(*%>*&*%%H$",&+%3#6+&$"D7>036$7"&3>%&#77H$",&l67&570'3>%& 6+%$>&7'6$7"*MMMM3"8&67&4"8&6+%&lR(*6]$"]6$0%&*70%7"%]#$H%]0%m&G+7&53"&3$8&6+%$>&8%5$*$7"& making” (Fox and Jones: 2009). 27##7G$",& 3>%& *'%5$45& 8%63$#*& 7D& +7G& 3"8& G+9& '36$%"6& 38I7536%*& 5+3##%",%& 6>38$6$7"3#& notions of authority: }& Authenticity as detailed previously, which leads to trust – a different currency 6+3"&6+36&G+$5+&6>38$6$7"3#&3(6+7>$69&4,(>%*&6>38%&$"M }& 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 3&,%"%>3#&'>356$6$7"%>M&B+%9&039&)%&57"*$8%>%8&3&"7"]h(3#$4%8&%P'%>6M }& Access to Information Because of their position, advocates often have access to information that others do not, for example research papers, policy papers, articles by doctors. }& Information dissemination Advocates often publish quite complex information in accessible language via their website or blog. Because of their authenticity and the resulting trust, the oftencited issue of information reliability when it comes to health information D>70&6+%&`"6%>"%6&$*&*()*63"6$3##9&0$"$0$*%8&*$"5%&$6&+3*&)%%"&3**%**%8&3"8&4#6%>%8&)9&6+%& advocate “expert” before it is published. 142
1 P M J O U R N A L O F D I G I T A L R ESEARCH & P UBLISHING }& Access to Experts Y(%&67&6+%$>&'7*$6$7"S&38I7536%*&3>%&$"&57"6356&G$6+&*5$%"6$45& experts and doctors –they can usually bring any information they receive from those experts to the patients, often with online radio interviews or articles published on their website or blog. The nature of advocacy revolves around some form of ‘opposition’ to a prevailing societal norm. The very content the thyroid advocates communicate to their followers is often controversial and is not usually endorsed by the prevailing medical authorities. For example, TPA UK have taken a strong stance against the Royal College of Physicians’ 8%"7("5%0%"6& 7D& 3& '3>6$5(#3>& 69'%& 7D& 6+9>7$8& 0%8$536$7"& .3>,(3)#9& G$6+7(6& *5$%"6$45& basis) and are currently campaigning to defend the medical licence of Dr Sarah Myhill, a particular doctor who chooses “alternative” methods to treat patients. In another direct attack on the mainstream medical community, Janie Bowthorpe rails against “heavy handed control of your medication”, the fact that patients stumble from “one uninformed doctor to another” and “Big Pharma apathy” (Bowthorpe: 2010) A review of the Real Thyroid Help forums and comments on advocates’ blogs reveals that from the perspective of patients, there are numerous reasons why they have responded to patient advocates: }& Free access to a wealth of information that is easy to comprehend }& Access to a global likeminded supportive community 9( :;;$5#4"7(/8(3$&
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