Ready for the stars ? Patients Included !

Healthcare's challenges are huge. Budget cuts, increasing demand and shortage of skilled personel. To find inspiration for solutions in example a lot of conferences are being set up. About healthcare, about the change needed, in solutions, finance...


Healthcare’s challenges are huge. Budget cuts, increasing demand and shortage of skilled personel. To find inspiration for solutions in example a lot of conferences are being set up. About healthcare, about the change needed, in solutions, finance and change for the better.

But ….mostly without the ones who this all is about : patients.  
Back in Spring 2009 i’ve started to ask patients to step up at our conferences and share. Like my friend Maarten Lens-FitzGerald (co-founder of Layar aka @Dutchcowboy he appeared again on our TEDxMaastricht 2012 conference  see below) 

As i wrote in February last year when i ignited the “patients included act“, and promised myself not to speak at any conferences anymore after a year creating awerness.  

Over the course of the past months it is good to see that change is happening, more and more conference organizers act or think about acting on putting the targeted groups at the table or on stage. Doctors 2.0 & You Paris, Medicine 2.0 Harvard, TEDMED Washington DC, Medicine X Stanford.

So that’s good news you would say, and yes it is, thát ís the good news. However, more and more conference organizers think it is a checkmark or an asset you can order. We even had organizers call us if we could provide “something like a patient” for them.

Often when asked to speak at conferences one of the first things that happens after i point them out to the “patients included act” a great thing happends; we have a discussion ! About why this is not standard, like on a conferences about doctors one would expect ; doctors, right ?  Most of the times my point has been made, and we agree to incorporate patients in the even as a whole, either on stage, reflecting on the program etcetera.  Sometimes there is a real disconect however, so works has to be done 😉

This brings me to the conclusion that there is not ‘one size fits all’ for this, and maybe we should include different levels of self-certification. AT one poit last week my friend and partner in “crime”
E-patientDave send me a tweet : “how about a 5-star rating ?’, which seemed to be so logical. And for that we started to write about what the different levels should or could be. should it be from 1 to 5, or even include negative ones so minus 1 star. I think it has to be a simple understandable, recognizable format, so we stick to the 5 star-format

But in concepting what each star stands for with Dave, it suddenly struck me that we were almost are doing the same as some others; filling the blanks for those of you out there. So that’s why i need your help. And why i would like to ask you to what the different stars in engagement level for healthcare conferences should stand for from 1 to 5.

After running this for a few weeks i will post a new set, based on your input here and though all our channels, hoping you will boost that message to each and ever event-organizer running a health(care) event. And with that boosting the “patients Included Act” to the next level.

This of course is not alone true with events, within a few days from now we (as Radboud REshape & Innovation Center” will announce though a press release our next step in the area of the ‘patients included act

Please add your perspective on the 1-5 star rating below. 

Example :

1: free tickets available for patients

2: patients in the program commitee

3: patients on stage or in panel

4: patients in program comitee and on stage or panel.

5: patients in program comitee and on stage or panel and under same conditions as the other professional speakers.

I am curious to your set-up of the 5 stars.


Maarten Lens-FitzGerald on TEDxMaastricht 2012




2 reacties

  1. 1. I totally love the idea. (Of course, since I was your "partner in crime.") To me this is not just demanding better treatment of the patient’s point of view – to me this is DOING SOMETHING useful about it: starting the process of thinking together about what it could be. That’s partnership in creating change!2. Toward that end, I’d suggest we step off to the side for a moment, and before we assign stars, first we brainstorm the many ways we can imagine that the patient voice COULD be involved.You listed some, in your post. Here are some more random ideas, in no particular order. (Should this be compiled into a Google Doc or something?) Some of these might be parameters for "star" ratings; others are just ways to hear patients more effectively. – patients have their travel expenses funded – At the event, patients are treated as honored special guests, with a special ribbon on their badge.- new conference technologies are developed that let patients participate WITHOUT traveling. (A simple example today is livestreaming of events.)- conference organizers actively monitor social media channels, during and after the event, and perhaps even before. This requires the simple act of creating the hashtag in advance, and creating a channel page on Symplur etc.—– The purpose of this monitoring is to hear what patients think about what’s being planned and what’s being said.- we reach out to patient organizations everywhere, teaching them to think differently about this. (Many of them have learned to "live in a box" constrained by what they’ve been offered in the past.)- For events that have an audience response system for mid-speech polls, it would be great to have patients tagged as a special class, so their responses can be seen as part of the whole, or as a separate category, to learn whether patients see things differently.More later … thank you for starting this!

  2. This is a 5-star rating I endorse with 5-and-a-half stars! For patients to truly be seen as equals, we have to be … equal. In all ways. Yes, we are all patients, and clinicians are "us". However, clinicians rarely wear their patient hat to conferences UNLESS THEY’VE HAD A MAJOR HEALTH EVENT themselves.Patients in the room will always deliver insights and opinions that will positively shift perceptions on many thorny health/medicine questions. Hell, even cost winds up at the table if you ask a patient =)

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