Originally published by Lucien Engelen on LinkedIn: Patients included in conferences just got a boost.
“We are all patients”, “it is all about patients” or this one : “we know what our patients want”. Those were some of the arguments against including patients on stage or in the audience, we always heard back in 2010.
It is great to see the uptake that has taken place since. Not only the patients got more vocal due to the use of the internet, social media but they also stood up more and more.
Sometimes addressing it over and over and taking action as conference-organizers or speakers ourselves helped a bit as well. For that i took stand myself in 2010 to no longer speak at conferences where patients were not included, and took care for inclusion in all of our conferences we set stage for as Radboud University Medical Center. We even created a logo, filed a trademark, created a website and criteria for it (2012). Not for commercial reasons, since it is self-accreditation via http://www.patientsincluded.org/ with the help of great volunteers, but to protect misuse of it.
A lot of conferences worldwide have been supporting the PatientsIncluded movement by self-accrediting as official Patientsincluded events, like the European eHealthweek 2016, set up by the Dutch government and HIMMS Europe, one of the highlight was the keynote of Anne_Miek Vroom. Or the Exponential Medicine series of Daniel Kraft at Singularity University with for instance Steven Keating on "can selfies save us ?" . But it is also something in need of constant repetition like in this BMJ blog (2013).
PatientsIncluded is something we take very seriously as a Academic Medical Center like in the first TEDx we set stage for (2011) with a 1000 seats in the audience, and actually 4000 wanted to get in. The first announced speaker was ePatientDave (his talk even made it to the big TED platform) , as one of the 1/4 speakers who where patients and since all of our conference were free of charge, we did not had to issue scholarships.
It’s great to see Stanford Medicine-X, who back in 2013 was one of the first other conferences to be PatientsIncluded, now is creating their own version of a set of clauses for measuring. And actually addressing the need for patients included into conferences and design processes with their EveryoneIncluded program. It’s a notable conference, great passion and exposure and many great people connected to it. Although we could've imagined more synergy as this new set seems fairly similar, we really cannot have enough ways to incorporate patients into our processes in the creation of their health(care) on a daily basis and need good examples by walking the talk.