Achtergrond van ons Logo

4 (main) Stakeholders

1. Family and friends
2. School and care providers
3. Hospital and specialists
4. Researchers

Our communities consist of a mix of the above groups, especially the families and friends are represented. Each community will find schools, healthcare providers, hospitals, specialists and researchers who feel especially involved in 'their' condition and who think they have something to say, hereinafter referred to as 'professional Experts'. We invite these experts to share their knowledge but also to learn from the families and friends.

(secondary target groups; Government and insurers)
It would be nice if the government and health insurers would recognise, take seriously and possibly also support the work of the communities on WaihonaPedia. We believe that empowerment of 'patients' ensures that they are self-reliant, proud and can save on preventive care.

4 phases in our approach

Any person who comes into contact with a rare disorder will probably go through these phases, first you'll see things you notice, then you'll learn what they mean as you go along. Then comes a phase where you know what you could do/advise. We aim to bring people in phase 1 into contact with people who have reached phase 3 and who want to share it (so they reach phase 4 = Experts)¹
 
We think that these steps are best taken in a kind of workshop format:  the themeroom.
Our themeroom has the following characteristics:

1. It doesn't take long, at most 6 weeks.
2. Only motivated people will participate, preferably from different phases, but at least one person who knows and wants to share it ²
3. You can use the 4 tools described below.

4 tools to learn and share

1. Knowledge and its development
2. Experience stories
3. Ask the expert
4. Questionnaire/scorecard

We have developed 4 tools that are important for seeing, learning, knowing and sharing. It starts with being able to read what is already known; published knowledge with a clearly recognizable quality label. It is also important in this phase to be able to read what others have experienced (thematically oriented) through the experience stories. To learn you need to be able to ask questions via ask the expert. To learn more details you can fill in our questionnaires. We have also made sure that all these resources can easily be shared and found so that others can also read and learn.
Developing new knowledge is often the result of a workshop, we learned something. This should eventually result in developing better knowledge.
 

4 Colors

1. Blue - water, movement
2. Green - natural and growth
3. Yellow - land, development, fertility
4. Grey - mountains/stone, foundation

1. ^ Often people who know something professionally and share it are seen as the experts, in WaihonaPedia family members and friends can reach this status as well
2. ^  This is also possible. that you have a hypothesis that you want to share and ask others what they think about it.