The Dutch Model of Ownership
From ‘patient involvement’ to communication at a level of equals
Tekst: Hans van de Velde – voorzitter Expertisegroep
Aanleiding: presentatie tijdens het 9th ADHD World Congress in Amsterdam, 18 mei 2023
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Expertmeetings were born
Back in 2013 we, the Dutch people with ADHD and dyslexia, united in the association Impuls & Woortblind, stepped out of the victim corner. This evolution started when we took the initiative to invite researchers to come and talk with us (instead of talking about us). The Expertmeeting was born: open conversation with scientists, practitioners and people with ADHD/dyslexia. All having an active interest in scientific research, have questions and ideas, and are open to the questions and ideas of others. The aim of these Expertmeetings was to stimulate contact between the members of the association and researchers, thus to engage in a dialogue about the Dutch scientific agenda for the coming years.
Behind this evolution was a vision: show ownership by taking initiative and changing our own language. Don’t complain and get stuck in the drama triangle.*) ADHD is a set of properties of our brains and behaviour. We are the owners of our properties. Scientists and practitioners are our providers or specialist suppliers. Let’s invite them to talk with us, the experts with lived experience. These mental steps we took, changed our tone of voice as well as our attitude.
Active members of our association are now organised in an expertise workgroup we call “The Science Committee” (Expertisegroep), generating ideas and questions. Participants at the Expertmeetings are proud to be part of it and happy with the exchange of ideas. Inspired by these meetings, our collaborative research on the strengths of ADHD even won an Open Science Award from the Dutch Ministry of Education & Science.
Following from the above, as of 20 April 2023, we have even taken it a step further. The ‘owners of ADHD’ have taken the initiative to create a Platform together with scientists and practitioners/professionals.
Co-creation and mutual inspiration
Goals of this platform are: Expertmeetings for mutual inspiration, selecting study – and research topics, dissemination of research outcomes and formulating questions, as well as, from time to time substantiating hypotheses. As a network hub, building mutual contact and exchange. Next to the semi-structured inspirational meetings, we plan to have a virtual place where ideas and questions can be exchanged.
This network enables the important mission of research co-creation and citizen-science.
*) drama triangle: victim – rescuer – persecutor
We invite you to contact us about cooperation between people with ADHD and scientists in your country: [email protected]
Beeld: 8photo op Freepik
I would be very interested to attend the 9th World Congress on ADHD. However, a registration fee of 500 + euros seems to make this inaccessible/unattractive for many. What a shame..
Dag Linda, ja het zijn inderdaad bizarre bedragen. Nu is dit congres ook bedoeld voor professionals die dit vanuit hun werk doen en er punten mee verdienen. Maar je zou denken dat het wel goedkoper moet kunnen.