The Patients Included Movement: My Comments on the Global Charter, re "Key Patient Advocates" & Transparency

"Patient centricity" is all the rage these days among pharmaceutical industry conference attendees and speakers. It is even becoming more common for actual patients to be part of the faculty/speakers and/or attendees of these conferences.

This wasn't always the case, which is why Lucien Engelen launched the "NO-SHOW Patients Act" in 2012 (read "No-Show patients on conferences : Patients Included™"). Lucien founded and is the Director of the Reshape Center at the Radboud University Medical Center located in the Netherlands. The Center is at the "convergence of patient empowerment and (exponential) technology."

Lucien said he no longer could imagine a conference about healthcare with a NO-SHOW approach of patients, by which he meant:

• no patient IN the program, 
• no patient ON the stage or 
• no patient IN the audience.

Lucien announced he would boycott such conferences by declaring "I will NO-SHOW on healthcare conferences that do not add patients TO or IN their program or invite them IN the audience also I will no longer speak at NO-SHOW conferences."

The "Patients Included" logo shown above can be used free of copyright for conferences that have patients ON stage, IN the program or invited as patients to the conference. "Do not ask US if your are eligible for it," says Lucien, "the audience will be your 'judge' ;-)" BTW, you can't use the fact that "we are all patients" to qualify.

Now the "Patients Included" movement is getting more complicated. Some activists are developing a "Global Charter" that goes much further than Lucien's NO-SHOW Patients Act and lays down specific compliance guidelines.

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