A #PatientsIncluded Charter for Hackathons
Dutch Hacking Health (#DutchHH16 | @HackingHealthNL | Facebook ) will be taking place this May 20th to 22nd, 2016. For the first time in history, four Academic Medical Centers (Groningen, Leiden, Maastricht and Nijmegen) will organize four simultaneous #PatientsIncluded hackathons. We want to challenge others from around the world to join the #PatientsIncluded Movement.
A BRIEF HISTORY OF #PATIENTSINCLUDED
Let’s start with a bit of history about on the #PatientsIncluded™ movement.
The term ‘Patients Included’ was first coined by Lucien Engelen on February 15th, 2012. Being struck by the lack of the attendance at healthcare conferences by the the people who it was all about – PATIENTS. Lucien decided to ‘throw a pebble in the pond’ and challenge his colleagues. Lucien and his organization would no longer attend nor present at conferences where Patients were not included as presenters or selected as members of the organizing committee. It was also requested that scholarships were granted to Patient attendees, who could seldom afford to attend. And at that time, a logo was also created and trademarked to mitigate commercial interests surrounding patient inclusion.
We believe that the only way to innovate and transform healthcare is by working WITH patients – at all levels and with all teams.
In a very short period of time, we were excited to see how #PatientsIncluded became a crowdsourced movement of its own, leading to the creation of two self accreditation charters – Conferences & Journals. We thus joined forces with the movement and granted them the use of the logo.
HACKING THE RIGHT “WORDS”
In understanding that Hackathons are different from conferences, we’ve created a set of criteria which we are testing during Dutch Hacking Health. In our eyes, #PatientsIncluded Hackatons are not tokenism (e.g., just having patients at the event); rather, they are defined by the inclusion of patients as key stakeholders and problem-solution owners in the development of new health(care) innovations.
Draft Charter for #PatientsIncluded Hackathons
- Patients or caregivers actively participate in creating and selecting the challenges to be solved at the Hackathon by being:
- Members of the organizing committee;
- Formally and informally granted time to share their stories about the problem to be solved with other hackathon participants and teams; and,
- Members of the jury that decides which project/team/idea is selected as the winner of the challenge.
- Patients or caregivers are actively invited, recruited, selected and recognized for their contributions to the team’s competing in the hackathon.
- 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.
HACKING HEALTH: A GLOBAL MOVEMENT
We would like to express our gratitude to the Hacking Health Team who has partnered with us at the Radboudumc REshape Center to leverage our mutual strengths with the #PatientsIncluded movement. Dutch Hacking Health is not just “for” and “by” coders, it is a partnership where we bring together the knowledge and experience of patients, developers, designers, entrepreneurs, and healthcare professionals to solve the health(care) challenges of today and tomorrow. Indeed, we are not the only ones with this vision, the Harvard Business Review has recently documented the many strengths of our approach.