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Experience Experts

Using experience experts is crucial

The use of experience experts in increasing and is not only regarded as a necessity but these experts are more often paid for their services – in any case in The Netherlands.  The Dutch expression “don’t talk about us without us” is certainly appropriate.  For example, the use of experience experts is being pushed by the VWS (Ministry of Health, Wellbeing, and Sport). One example is the CEO-council (Chief Experience Officers Council) of the VWS that is involved in making policies.  We are also a member of the CEO council.

Experience expertise is actually life experience and is not only useful for the person in question but can also be a source of information and inspiration for others.  One concrete example: when parents of a child who has had a disease or disorder for years can share their experience with parents of a child who recently is affected by the same disorder.  Bringing these parents together is one of the goals of our member conferences.

The Verwij-Jonker Institute has done research on experience experts in The Netherlands.  We have translated a summary of this research which follows.

The UN treaty for the rights of those with a handicap (United Nations agreement Handicap) is applicable in The Netherlands since July, 2016.  It is an extremely important agreement.  It gives those with a handicap or chronic disease the right to equal treatment, both medically and in the society.  The government and the social sectors must follow the rules of the treaty.

The involvement of experience experts is crucial to adhere to the treaty.  The government and other organizations are required to use these experts.


This level of activity is, for example, discussing raising children or the use of social media.

Level 1

At this level, the expert’s role is that of a buddy or host/hostess.  This can involve participation in research or panels as a patient advocate.  In addition, sharing personal experiences is important.

Level 2

Being involved in research and projects falls under this level.  This can be acting as a facilitator during a workshop or providing information to others in our organization.

Level 3

Activities at this level involve professional guidance.  The experts evaluate project and research proposals and contribute to developing policies as well as activities in our organization. They present their story. In terms of education level, one should think of secondary vocational (+) education.

Level 4

Experts at this level are involved in, for example, the audit commission and complaint commission. Other possible roles are in project management or coordinating activities such as our Family Day.  Those involved are at higher professional education (+) level (such as BSc).

Level 5

This is mainly management level within our organization as well as our external advisors: for example managers and medical advisors.  The educational level regarding management is higher professional education (+) and medical advisors Masters or PhD.


Dutch Government

United Nations treatry

Partner organizations United Nations Treaty (The Netherlands)

Four organization work together in the Alliance for implementation of the UN-Treaty to maximize the influence of those with impediments. This alliance includes:

You can use Google Translate to translate the Dutch websites.