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Saturday, January 14, 2017

The Ideal Clinical Trial Patient? (An article by an MS Patient)


                                                                  
  

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By Laura Kolaczkowski - January 2017


Just when I thought the patient experience and  our voice was being considered  and respected as a serious partner to the drug industry, I get that reality call to take off the rose colored glasses.  This time the splash of cold water to bring me back to my senses came via a tweet from a respected person in the patient advocacy field.This person had received an electronic newsletter from Clinical Leader, a group that states they are the "premier online community that helps streamline clinical research by connecting trial sponsors and cutting edge service providers." and when the headline 'The Anatomy of the Ideal Clinical Trial Participant' was selected, this infographic appeared -

perfect_trial.jpg


When this company, who I remember talking with at DIA 2016 because they were a rather large and loud exhibitor, was called out on Twitter for this graphic, the immediate corporate response was  the 'infographic was not intended for this use in this context - published without our permission."  Then the next tweet contritely states 'we regret any offense it conveys and respect patients!'  It appears they have removed this infographic from their website because the existing links on the corporate web not longer exist.  However, it does live on in other places, and in many twitter accounts in the health care advocacy community, and raises red flags and sets off consumer alarms. I know I will be using it again and again as an example of insensitivity to the concept of patient engagement and patient centric research, as will others.

If a company creates a product that is not meant to be shared, where else was it meant to be used? Is this a marketing tool for clients they want to recruit to hire their services? Is this another example of locker room banter and jokes that really isn't thought to mean anything? It appears to have been professionally designed so it can't be passed off as someone's crude doodling while bored during a meeting listening to the latest recruitment statistics. It sickens me to think that professional presentations in board rooms may have included the tale of this little piggie.


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