The history of #PatientsIncluded™
Let’s start with a bit of history about the #PatientsIncluded™ movement. The term ‘Patients Included’ was first used by Lucien Engelen on february 15th in 2012. Being struck by the lack of the attendance at conferences about health(care) of the people who it all is about: patients, he wanted to ‘throw a pebble in the pond’. He decided to no longer present nor visit conferences without patients being present on the stage, as members of the organising committee, or offering patients bursaries to attend and waiving the entrance fee. Next he started to urge others to do the same and created a logo, to show the support on the #PatientsIncluded™ ‘act’.
Creating the movement
Aside from the events we visit and get invited to, we also try to organise at least one inspiring event every other year ourselves. What started with the REshape Pecha Kucha nights grew into events like Medicine20 in 2010, TEDxMaastricht in 2011 & 2012 TEDxRadboudU as an internal event and of course our TEDxNijmegen in our home city in 2013. We also organised a second TEDxRadboudU on ‘rebuilding trust” with our Radboud University. Of course on each and every one of these events we matched the criteria for #PatientsIncluded™ because we believe that the only constant in healthcare is the patient.
We think the only way to innovate and disrupt healthcare is with patients.
Since then many conferences expressed their support and inclusion of patients, the BMJ started a #PatientsIncluded™ advisory group on peer reviewing articles, and spreaded attention to the movement, and for their great effort and leadership was granted the first ever #PatientsIncluded award in 2015.
Earlier this year, in march and april 2015, a group headed by Andrew Spong asked Lucien if he would support a next step in the #PatientsIncluded™ act, but setting clauses that conferences have to meet, and next listing these conference on a ‘accredited’ list. Although it will be though to clearly identify some of the clauses, he agreed to grant the use of the #PatientsIncluded-logo (trademarked to prevent commercial use of it) and his support to this group. This group of 25 members started writing on a charter that would help organisations to define how their events are Patients Included. This charter included 5 criteria.
- Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
- Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
- Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
- The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
- Access for virtual participants is facilitated, with free streaming video provided online, wherever possible.
Ticking the boxes for REshape HackingHealth 2015
1) Patients included in designing, planning and setting up the program
When we started the organisation of this event we asked patients and healthcare professionals to submit topics we could address during the hackathon. Next to that the patients will ‘pitch’ their own theme on friday, and are part of the organising committee.
2) Patients participate on stage and in the audience
On Friday evening or as we’ll have ‘Pitch Night’ where patients will to introduce their own themes and tell their stories. Next to that we encourage every team to have at least one patient and one healthcare professional in their team to build a bridge between knowledge, experience and creativity!
3) Expenses are paid for patients and/or caregivers participating in the advertised program
We’ll make sure that every invited guest that has a part in the program will have their travel expenses covered and sleeping accommodation in advance when necessary.
4) Disability requirements of participants are accommodated
The venue for the hackathon is part of Radboud University Medical Center and was previously used as an intensive care and is perfect for accommodating any disability requirements. However, if there are any special requests or if you just want to check something to be sure don’t hesitate to ask us on social media or by using [email protected] and we’ll fix it ;-)!
5) Access for virtual participants is facilitated
Being a hospital we have limited bandwidth for non-healthcare applications. For this reason we won’t be able to provide everyone with a livestream. However, to make sure that patients and everybody else who would like know more about the results of the event we will record the final pitches on sunday and put them online in the weeks following the event! Next to that we encourage patients to join us on social media so that they can still follow our live blogs online!
We will have some other nice things for the hackathon up on our sleeves, we will reveal later on.
We look forward to have lot’s of fun and meaningful results at the very first #PatientsIncluded™ Hackathon.