#patientsincluded; what else ?

“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 organizing 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.”

 

(below a repost of the original post in 2010 on Posterous that terminated their service in 2012)
After a long period of setting up conferences, Pecha Kucha Nights TEDx-es etc where I tried over and over again to offer the stage to patients in one way or the otherI i was reflecting on that a bit.

We’ve succeeded in that in almost every aspect of it. Not only on our Pecha Kucha Nights, or TEDxMaastricht conference with 5 patients (so 1/5th) just as our next one on April 2nd will have, on our TEDxRadboudU, of course, our e-patientsbootcamp was RUN by patients, just like the night after where we invited physicians to bring their patients with them.
And at our Radboud REshape Academy we will be happy to have patients for free in the audience, next to the fact that in every Masterclass will start with a patient story told by a patient.

The result of that I really cannot imagine a conference anymore about healthcare with a NO-SHOW approach of patients. That is :

no patient IN the program,

no patient ON the stage or

no patient IN the audience.

As patients that is, it is too easy IMHO to state :
“well we are all patients” , “it is all about patients” or this one : “we KNOW what our patients want” well …..YOU DON’T.
Ever since i have appointed CLO (Chief Listening Officer into my REshape team,, we find on a day-today basis that you don’t. And that completely logical if one has only 7 minutes to spare with your patient.

Let’s stop talking about patients as if it were ” a third-person word”, as my friend e-patientDave states often.

This is just like people at your work are having a meeting about you…. without you, right? These conference to me are what I call NO-SHOW-Conferences.

I’ve been around lately keynoting on conferences on this little blue marble, and over a year mostly start with the most important question: http://www.slideshare.net/lucienengelen/mhealth-conference-dubai-2010

Thinking about this lately, there is only one right thing to do: NO-SHOW to these conferences!

And it’s time for a change, time to step-up, or maybe step down actually.

And that is precisely what I will be doing as of tomorrow, and will be completed by April next, after addressing and stretching this whenever i can over the course of the upcoming year.

I will NO-SHOW at 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.

I ask you to do the same, only then we can make a statement and really change healthcare. It will take some time, including in our own surroundings, but just let’s start.

Start listening to (your) patients or to put it like one of our patients (mr Rene Tabak) told us at TEDxRadboudU recently :

“Do not look at me, but SEE me. Do not listen to me but HEAR me”

Conference organizers could use the logo below to state the support the NO-SHOW Patients Act so everyone can see that this is a Patients Included: conference.

Patients_included

It is downloadable as JPG or as PNG or TIFF or PDF and can be used free of right for conferences that have patients ON stage, IN the program or invited as patients to the conference.

Already supported i.e. by these great conferences : (send us a link in the comments to your conference if your support the Patients-Included-Act so would update it from time to time)

It is a trademarked logo and can be used in the context as described above, for non-commercial purposes.
https://patientsincluded.org