1.5 Experts by experience: Five roles in the social domain (NL) [1]

Supporter, companion, buddy, coach

The role most developed, especially in the mental health sector, is that of ‘help’ in the sense of a supporter, companion, buddy, coach, etc. The idea is that the expert by experience has added value in this role, because he/she can sense what the inner world of people with similar experiences looks like, and from there can stand alongside people stand beside people. The expert by experience can therefore ask different questions,and convincingly deal with stigma, shame, incompetence, powerlessness and discomfort. From this knowledge and position, the expert by experience can offer help and support. Moreover, the expert by experience can bring a hopeful perspective bring in: in the contact with the expert by experience, the client’s client not only awareness of being different but also hope and perspective. hope and perspective. Indeed, the client can see in people with similar problems that an expert by experience is able to function despite these is able to function again despite these problems. This also gives them hope that a road to recovery or empowerment is possible for them. The expert by experience thus fulfils an exemplary function. Besides helping a single individual, an expert by experience can also fulfil this role at the group level. An example of this is ‘peer support’. For years, peers’ and self-help groups have existed on various issues in the social domain, such as coping with psychiatric disabilities, problems around poverty and debt, informal care, addiction, etc. Some of these methodologies have already been highly developed and researched, such as the WRAP methodology, which helps people in their recovery under the guidance of experts by experience. The training courses that have now been developed specifically for experts by experience have been developed, focus mainly on how to be able to perform this role: as a supporter for fellow sufferers. Students are guided in their own process, and learn how they can support others as best possible support for others.

Policy influencer

There are currently many places in the social domain where people are involving experts by experience and/or people with experience knowledge in policy preparation, implementation and/or evaluation. Professionals and administrators can use experiential knowledge to provide (policy on) help and support that better matches with the needs and requirements of people with a disability or condition. If municipalities or institutions in attach importance to the input of experiential knowledge in the policy process, this requires other forms to organizing and doing this participation.

Competency Enhancer

If experiential knowledge is a distinct source of knowledge, it makes sense to use it purposefully. Experts by experience can be found in this role in education, policy, and social district teams. Particularly in vocational education, there are increasing numbers of experts by experience who contribute to the curriculum as co-teachers. Their stories add something essential to the knowledge that the teacher can convey from theory and objective knowledge. This also applies to current professionals. When experts by experience are added to a care team, it is partly to inform colleagues but also to provide feedback on their actions. Alternatively, district teams may request training from an expert by experience, either alone or in combination with a caregiver. Finally, experts by experience offer competency enhancement to policy staff. For example, the municipality of Amsterdam has policy staff receive training on the theme of loneliness from an expert by experience, and in Amsterdam-Zuid, the municipality, mental health services, welfare organizations, and experts by experience collaborate at the implementation level to reduce loneliness.

Researcher

Experts by experience are sometimes involved in research within the social domain. This involvement can begin with the formulation of the research agenda. The contribution of experts by experience aims to ensure that the proposed research addresses questions that are genuinely relevant to people in vulnerable positions. Experts by experience can also play a role in the execution of the research, either as advisors or co-researchers. This can be a principled choice for the involvement of the target group (not about them, but with them), as well as a method to achieve better research results. The latter can occur when researchers with experiential knowledge are better able to reach and/or question the relevant target group. The more value placed on experiential knowledge as an independent source of knowledge, the greater the role of experts by experience in research becomes.

Initiator of Innovation

In addition to the formal roles, some experts by experience take on the role of innovator. They identify gaps in the existing care services and develop alternatives. Through qualities such as resourcefulness, entrepreneurship, and perseverance, experts by experience initiate new projects that closely align with the lived experience.

Footnote

[1] Van Der Kooij, A., Keuzenkamp, S., Movisie, & ministerie van VWS. (2018). Ervaringsdeskundigen in het sociaal domein: wie zijn dat en wat doen ze? (Tekstbureau Zonder H, Red.). https://www.movisie.nl/sites/movisie.nl/files/publication-attachment/Startnotitie-Ervaringsdeskundigen-in-het-sociaal-domein%20%5BMOV-13952652-1.0%5D.pdf

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Read more about the seven work packages

1. Key educational principles 
2. Guide with didactical and pedagogical methods 
3. Training programme for lecturers
4. A support kit for experts by experience
5. Framework for integrating experiential knowledge
6. Digital forum with state-of-the-art literature
7. Monitoring and evaluation 

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A support kit for experts by experience