“When I was presenting at medical and technology conferences around the world people used to talk about what the patient wants, or what the doctor wants, without a patient, doctor or nurse being in the room. This astonished me, and a real page turner for me was a conference in Dubai, where all the major telecom companies in the world were present. Everyone was talking about mHealth, how huge it would become, and how many people would be using it, and thereby earning many billions of dollars.
When it was my turn to deliver my keynote, I asked the audience ‘How many patients are present here?’. Not one, it appeared.
That there should be so much talk about what patients need and want without them being present prompted me to take action.
I decided to no longer present nor visit conferences without patients being present on the stage, or as members of the organising committee, or offering patients bursaries to attend and waiving the entrance fee. During the following year, I continued to push my message and encouraged conferences that took action to use the Patients Included logo which I devised. The following year, I stopped accepting speaking requests if the meetings did not meet the Patients Included criteria.”
The Patients Included charter formalises these aspirations, first expressed by Lucien Engelen in a blog post in 2010.
What is the purpose of the Patients Included charters?
Patients Included charters provide entities with a means of demonstrating their commitment to incorporating the experience and insight of patients into their organisations by ensuring that they are neither excluded nor exploited.
Which Patients Included charters have been published to date?
- Conferences (v.1.0 May 2015)
- Journals (v.1.0 April 2016)
- Patient information resources (v.1.0 December 2016)
- Ethics (v.1.0 April 2018)