Patientsincluded in conferences just got a boost.

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.

Lucien Engelen

Director of REshape

“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. 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 Centerlike 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 patientsand 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. 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.

Now as PatientsIncluded is next to conferences being broadened to also create clauses for Scientific Journals, randomized clinical trials and soon also for HC facility patient information leaflets (in 1-2 months first draft will be ready) etc. We even thought about ranking conferences on a ’star’ scale, but choose not to do so, since it is not about rating but about creating awareness.

In this interview video I elaborated on some of the aspects of Patients Included that is completely in the heart and strategy of our organization at Radboud University Medical Center and our network.

PatientsIncluded is also needed to be incorporated in many processes like co-designing healthcare (2014) and other aspects even including the change of our medical curriculum at Radboud University Medical Center in september 2015, safeguarding patients teaching medical students and innovating together with them as of day 1 they start. The kick-off of the new curriculum (2015) for 450 freshmen (and women 😉 also was done by patients, including ePatientDave again, and many others.

We were proud when the BMJ started on a mission to include patients into their journal processes we proudly presented them with the first ever Patients Included award (2014) for taking the leadership in a very, very traditional branch and that they still keep on track doing so (2016).

Still, there is a lot of work to do. Next to incorporate patients in every step we take, also changing the system according to the paradigm shift that is erupting from the digital world we live in.

Let’s do it.

In this interview video I elaborated on some of the aspects of Patients Included that is completely in the heart and strategy of our organization at Radboud University Medical Center and our network.