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The Ideal Clinical Trial Patient?
01-12-2017 03:21 PM
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 -
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.
I have removed the company name from the bottom of this screen shot so we don't have to debate about one particular company and instead focus on this message and the larger industry. Is this the way the patient subject is viewed - as an animal ready to be dissected for a corporation's gains? Personally I find this representation beyond offensive, and slipping my rose colored glasses back on, I want to trust those of you in the drug industry will find it unacceptable, too. The next time you meet with your marketing staff, I hope you will share our message that patient participants in trials are not animals waiting to be led off to slaughter.
At the end of this 'infographic' they write -
"It can take a precise mix of personal interest and circumstance to make someone truly enthusiastic about participating in a trial."
As a patient advocate and a clinical trial participant, I can tell you it takes much more than that because participating in a trial begins with trust. When we see drug industry messaging about the 'ideal' patient depicted this way, it destroys the trust all of us have tried to broker between the patient community and the drug industry.
01-13-2017 09:17 AM
Laura, thank you for bringing this up in our community. This is certainly something I will share around our organization. We are working hard to be part of a trusting and trusted community, and this sets us all back. Many thanks.
01-12-2017 09:08 PM
This image is not only offensive, but shows an outlandish ignorance of the research partnership between co-investigators. Even If they were "thinking" of research partners as "guinea pigs" the image is a terrible aberration. In current clinical research the patients are co-investigators carrying out the protocol and often reporting the results. In current patient centered research, patients are key in developing the project and overseeing the work.
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