<?xml version="1.0" encoding="UTF-8"?><rss version="2.0"
	xmlns:content="http://purl.org/rss/1.0/modules/content/"
	xmlns:dc="http://purl.org/dc/elements/1.1/"
	xmlns:atom="http://www.w3.org/2005/Atom"
	xmlns:sy="http://purl.org/rss/1.0/modules/syndication/"
		>
<channel>
	<title>Comments on: The Fake Patient (fPatient) &amp; Patient Engagement on Drug Companies’ Sites</title>
	<atom:link href="http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/feed/" rel="self" type="application/rss+xml" />
	<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/</link>
	<description>Bringing information &#38; encouragement to fight RA</description>
	<lastBuildDate>Wed, 23 May 2012 12:58:11 +0000</lastBuildDate>
	<sy:updatePeriod>hourly</sy:updatePeriod>
	<sy:updateFrequency>1</sy:updateFrequency>
	<generator>http://wordpress.org/?v=3.3.1</generator>
	<item>
		<title>By: Lorri</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-102868</link>
		<dc:creator>Lorri</dc:creator>
		<pubDate>Wed, 19 Oct 2011 23:06:45 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-102868</guid>
		<description>P.S. - Kelly - Thank you for your website. I don&#039;t think this site is dishonest or fraudulent in any way - and you allow people to comment and ask questions. Thank you for the time you spend on here. My RA diagnosis is fairly new - so I&#039;m only in the beginning stages, I would imagine. But I have been trying to arm myself with information - and almost all of it has been from this site! Lately, I&#039;ve just been praying a lot, that God would just heal me and I won&#039;t have to go through anymore pain or suffering! And yes, I send up a prayer for all the people I read about on here, as well as you, Kelly. Again, thank you for your time and desire to share what you learn and what you go through. Your honesty and unselfishness is greatly appreciated. We need more people like you on the web ....</description>
		<content:encoded><![CDATA[<p>P.S. &#8211; Kelly &#8211; Thank you for your website. I don&#8217;t think this site is dishonest or fraudulent in any way &#8211; and you allow people to comment and ask questions. Thank you for the time you spend on here. My RA diagnosis is fairly new &#8211; so I&#8217;m only in the beginning stages, I would imagine. But I have been trying to arm myself with information &#8211; and almost all of it has been from this site! Lately, I&#8217;ve just been praying a lot, that God would just heal me and I won&#8217;t have to go through anymore pain or suffering! And yes, I send up a prayer for all the people I read about on here, as well as you, Kelly. Again, thank you for your time and desire to share what you learn and what you go through. Your honesty and unselfishness is greatly appreciated. We need more people like you on the web &#8230;.</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Lorri</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-102863</link>
		<dc:creator>Lorri</dc:creator>
		<pubDate>Wed, 19 Oct 2011 22:49:09 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-102863</guid>
		<description>I think that the fake eSara is deplorable. Any company who fails to disclose the WHOLE TRUTH about who they are by:
1. Lying about who they are (i.e., presenting themselves as
   a &quot;real&quot; person who does not really exist);
2. Lying about the purpose or intent of the blog/website;
3. Being untruthful by &quot;omission&quot; (failure to mention or
   disclose either their identity or the purpose/intent of
   the website/blog or what they do with the information
   you give them)
4. Doesn&#039;t allow one to reply or comment or ask questions
is a dishonest company, and in my opinion, they forfeit their right to be trusted in ANY way, shape or form. As in any &quot;crime,&quot; you are a suspect of criminal activity or intent if you lie or fail to disclose information. In the same way, I would &quot;suspect&quot; a lying or dishonest company of either straight-out criminal acts or intent, or &quot;immoral&quot; or &quot;unethical&quot; practices. In my eyes, when people feel they have to resort to lying or being dishonest in other ways, it&#039;s because they are &quot;hiding&quot; something or otherwise up to no-good.
If a company wants to host a blog or interactive website, they ought to be 100% honest and forthcoming with who they are (not &quot;priming&quot; by using fake people), what the intent and/or purpose of the blog/website is, and what they will do with any information provided by guests. Further, they MUST allow guests to CHOOSE what they want to answer and what they don&#039;t (without being penalized or denied access), and MUST allow guests to leave comments and/or ask questions. Anything less is criminal (or at least should be).</description>
		<content:encoded><![CDATA[<p>I think that the fake eSara is deplorable. Any company who fails to disclose the WHOLE TRUTH about who they are by:<br />
1. Lying about who they are (i.e., presenting themselves as<br />
   a &#8220;real&#8221; person who does not really exist);<br />
2. Lying about the purpose or intent of the blog/website;<br />
3. Being untruthful by &#8220;omission&#8221; (failure to mention or<br />
   disclose either their identity or the purpose/intent of<br />
   the website/blog or what they do with the information<br />
   you give them)<br />
4. Doesn&#8217;t allow one to reply or comment or ask questions<br />
is a dishonest company, and in my opinion, they forfeit their right to be trusted in ANY way, shape or form. As in any &#8220;crime,&#8221; you are a suspect of criminal activity or intent if you lie or fail to disclose information. In the same way, I would &#8220;suspect&#8221; a lying or dishonest company of either straight-out criminal acts or intent, or &#8220;immoral&#8221; or &#8220;unethical&#8221; practices. In my eyes, when people feel they have to resort to lying or being dishonest in other ways, it&#8217;s because they are &#8220;hiding&#8221; something or otherwise up to no-good.<br />
If a company wants to host a blog or interactive website, they ought to be 100% honest and forthcoming with who they are (not &#8220;priming&#8221; by using fake people), what the intent and/or purpose of the blog/website is, and what they will do with any information provided by guests. Further, they MUST allow guests to CHOOSE what they want to answer and what they don&#8217;t (without being penalized or denied access), and MUST allow guests to leave comments and/or ask questions. Anything less is criminal (or at least should be).</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-16686</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Wed, 02 Jun 2010 01:12:13 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-16686</guid>
		<description>Hi Sara, Thank you for posting. It&#039;s good to hear from you. As I think I told you last year, I agree that you ought to be paid for your work. Yes, trailblazing means we figure it out as we go.
Hopefully, the fake Sara / real Sara contrast did make you laugh. There is a world of difference, of course. :heart:</description>
		<content:encoded><![CDATA[<p>Hi Sara, Thank you for posting. It&#8217;s good to hear from you. As I think I told you last year, I agree that you ought to be paid for your work. Yes, trailblazing means we figure it out as we go. </p>
<p>Hopefully, the fake Sara / real Sara contrast did make you laugh. There is a world of difference, of course. :heart:</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Sara</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-16683</link>
		<dc:creator>Sara</dc:creator>
		<pubDate>Wed, 02 Jun 2010 00:14:08 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-16683</guid>
		<description>I have never heard of the eSara campaign, but I have to admit that I am a. not surprised, but b. completely freaked out by it, especially since she shares my name and spelling of my name. That&#039;s creepy and misleading.
I think that you and Lisa are bringing up lots of good points, and even though I am now a blogger who has partnered with a pharma company, I am also still working out a lot of my own thoughts to what it all means to be involved with a pharma company.  I&#039;m glad that people are talking about it, too, because there isn&#039;t really a manual out there for those of us who are blogging and are interested in becoming more involved as an advocate/spokesperson- I am figuring it out as I go along, as are most of us.
One of my hesitations in doing New Way RA initially was that I wasn&#039;t sure what the reaction would be in the blogging community- would it affect my credibility, would I be seen as &#039;selling out&#039;, etc.  I suppose the verdict is still out on that one, but nothing ventured, nothing gained.
I also knew that being on the program would take up a considerable amount of my time and energy, two things I value highly, and that as a &#039;real&#039; blogger, I was bringing a certain amount of cache (or perceived cache) to their program.  I felt I should be compensated for my time and my experience, even though I knew that could potentially alter my status as a patient blogger further.
One reason I felt ok about doing the program, and ultimately decided to give this it a go, was that I don&#039;t take any of the drugs Centicor makes. If Amgen &amp; Wyeth had approached me about getting involved, I&#039;m not sure that I would have said yes, even if everything else had been exactly the same.  For me, knowing that I don&#039;t personally use any of the drugs Centicor makes (or profits on) felt like a way to preserve a personal boundary. And, to reiterate, I was never asked to write anything about New Way RA, have not received any payment for anything I have chosen to write about New Way RA, nor did they have any editorial say in what I wrote (nor do they now), so my words and opinions remain exactly that.
Ultimately, I&#039;m interested in helping get more information out there about RA and putting a non-stereotypical face on RA, and I felt like the potential for good outweighed the murky, complicated issues in this instance.
I will say I didn&#039;t realize (and perhaps should have done better homework) that in order to see the videos for New Way RA, one would have to give as much information as you do and consent to receive emails from Centicor....though there are ways around that, which I posted in the comment thread on my blog about it. I do believe that the team I worked with on New Way RA does sincerely want to create a platform for people to learn more about RA and become better advocates for their own health.  I feel good about my involvement with the program, but am definitely interested to see how these issues continue to develop, what questions arise both personally and in the greater blogosphere, etc., even though I realize there could potentially be a backlash of sorts again me or my blog.
Thanks for raising the issues in such an organized and thoughtful post. I hope more people will discuss so that these complex issues and relationships can begin to be sorted out.</description>
		<content:encoded><![CDATA[<p>I have never heard of the eSara campaign, but I have to admit that I am a. not surprised, but b. completely freaked out by it, especially since she shares my name and spelling of my name. That&#8217;s creepy and misleading.</p>
<p>I think that you and Lisa are bringing up lots of good points, and even though I am now a blogger who has partnered with a pharma company, I am also still working out a lot of my own thoughts to what it all means to be involved with a pharma company.  I&#8217;m glad that people are talking about it, too, because there isn&#8217;t really a manual out there for those of us who are blogging and are interested in becoming more involved as an advocate/spokesperson- I am figuring it out as I go along, as are most of us.</p>
<p>One of my hesitations in doing New Way RA initially was that I wasn&#8217;t sure what the reaction would be in the blogging community- would it affect my credibility, would I be seen as &#8216;selling out&#8217;, etc.  I suppose the verdict is still out on that one, but nothing ventured, nothing gained.</p>
<p>I also knew that being on the program would take up a considerable amount of my time and energy, two things I value highly, and that as a &#8216;real&#8217; blogger, I was bringing a certain amount of cache (or perceived cache) to their program.  I felt I should be compensated for my time and my experience, even though I knew that could potentially alter my status as a patient blogger further.  </p>
<p>One reason I felt ok about doing the program, and ultimately decided to give this it a go, was that I don&#8217;t take any of the drugs Centicor makes. If Amgen &amp; Wyeth had approached me about getting involved, I&#8217;m not sure that I would have said yes, even if everything else had been exactly the same.  For me, knowing that I don&#8217;t personally use any of the drugs Centicor makes (or profits on) felt like a way to preserve a personal boundary. And, to reiterate, I was never asked to write anything about New Way RA, have not received any payment for anything I have chosen to write about New Way RA, nor did they have any editorial say in what I wrote (nor do they now), so my words and opinions remain exactly that.</p>
<p>Ultimately, I&#8217;m interested in helping get more information out there about RA and putting a non-stereotypical face on RA, and I felt like the potential for good outweighed the murky, complicated issues in this instance.    </p>
<p>I will say I didn&#8217;t realize (and perhaps should have done better homework) that in order to see the videos for New Way RA, one would have to give as much information as you do and consent to receive emails from Centicor&#8230;.though there are ways around that, which I posted in the comment thread on my blog about it. I do believe that the team I worked with on New Way RA does sincerely want to create a platform for people to learn more about RA and become better advocates for their own health.  I feel good about my involvement with the program, but am definitely interested to see how these issues continue to develop, what questions arise both personally and in the greater blogosphere, etc., even though I realize there could potentially be a backlash of sorts again me or my blog. </p>
<p>Thanks for raising the issues in such an organized and thoughtful post. I hope more people will discuss so that these complex issues and relationships can begin to be sorted out.</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-15168</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Fri, 21 May 2010 18:29:31 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-15168</guid>
		<description>I love that movie - the old version. I don&#039;t know whether it&#039;s a political statement or whatever, but I love the point that making us all into a mold is a horror. :P</description>
		<content:encoded><![CDATA[<p>I love that movie &#8211; the old version. I don&#8217;t know whether it&#8217;s a political statement or whatever, but I love the point that making us all into a mold is a horror. <img src='http://rawarrior.com/wp-includes/images/smilies/icon_razz.gif' alt=':P' class='wp-smiley' /> </p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Caysea</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-15165</link>
		<dc:creator>Caysea</dc:creator>
		<pubDate>Fri, 21 May 2010 18:18:03 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-15165</guid>
		<description>ESara kinda reminds me of the movie &quot;The Stepford Wives&quot;.</description>
		<content:encoded><![CDATA[<p>ESara kinda reminds me of the movie &#8220;The Stepford Wives&#8221;.</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-15139</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Fri, 21 May 2010 15:51:27 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-15139</guid>
		<description>Hopefully, they realize what is going on.</description>
		<content:encoded><![CDATA[<p>Hopefully, they realize what is going on.</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-15137</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Fri, 21 May 2010 15:45:28 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-15137</guid>
		<description>I hear you. Hopefully, not all of them. They certainly need to better represent themselves, though.</description>
		<content:encoded><![CDATA[<p>I hear you. Hopefully, not all of them. They certainly need to better represent themselves, though.</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-15134</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Fri, 21 May 2010 15:36:35 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-15134</guid>
		<description>Thanks for all the info, Lisa. I appreciate hearing your opinions on these things. We are certainly in new territory w/ new media &amp; new relationships w/ pharma, etc. I hope the new treatment helps you.</description>
		<content:encoded><![CDATA[<p>Thanks for all the info, Lisa. I appreciate hearing your opinions on these things. We are certainly in new territory w/ new media &#038; new relationships w/ pharma, etc. I hope the new treatment helps you.</p>
]]></content:encoded>
	</item>
	<item>
		<title>By: Tweets that mention The Fake Patient (fPatient) &#38; Patient Engagement on Drug Companies’ Sites &#124; Reality check &#124; Rheumatoid Arthritis Warrior -- Topsy.com</title>
		<link>http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/comment-page-1/?show=comments-15106</link>
		<dc:creator>Tweets that mention The Fake Patient (fPatient) &#38; Patient Engagement on Drug Companies’ Sites &#124; Reality check &#124; Rheumatoid Arthritis Warrior -- Topsy.com</dc:creator>
		<pubDate>Fri, 21 May 2010 11:31:37 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=4644#comment-15106</guid>
		<description>[...] This post was mentioned on Twitter by Silja and Odom Lewis, SharingStrength. SharingStrength said: RT @whydotpharma: #hcsmeu Q2: Pls also check out this post by @rawarrior for a REAL epatient perspective: http://bit.ly/aBrUAE :-) [...]</description>
		<content:encoded><![CDATA[<p>[...] This post was mentioned on Twitter by Silja and Odom Lewis, SharingStrength. SharingStrength said: RT @whydotpharma: #hcsmeu Q2: Pls also check out this post by @rawarrior for a REAL epatient perspective: <a  href="http://bit.ly/aBrUAE">http://bit.ly/aBrUAE</a> <img src='http://rawarrior.com/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' />  [...]</p>
]]></content:encoded>
	</item>
</channel>
</rss>

