Power of together: WaihonaPedia

WaihonaPedia is for and by parents with a child with a very rare condition. Here, parents, family members, carers and experts can share knowledge and experiences with each other and learn from each other. For example, by filling in questionnaires, asking experts questions and sharing stories of experience. By increasing the knowledge of the caregivers (the family or professional caregivers) the quality of life of the child and the family improves and the knowledge about the disorder also increases among experts (doctors, teachers, care-professionals, researchers).

WaihonaPedia is a meeting place where participants want to feel secure. Therefore, we apply a Registration Procedure> in order to protect our communities. If you want to participate, you can ask for this using the 'login' button, and our community members will validate your request.

What is the problem

It is recognised worldwide that people (and their families) who are diagnosed with a so-called rare disease that is congenital, that causes lifelong multiple physical disabilities, partly due to intellectual and sensory impairments, are unable to 'come along' in society. They do not receive timely treatment, therapy or care that increases their chances and quality of life. In fact, they often receive incorrect advice.
To a large extent, the cause must be sought in the unavailability of sufficient knowledge (information) in the right place and at the right time and made sufficiently personal.

The WaihonaPedia solution

We want to offer Patients and their families and/or caregivers the opportunity to contribute to and participate in knowledge development THEMSELVES. We will connect them with the experts (professionals) so that the needs that do not yet have a good solution are better known, experiences that contain possible solutions are collected and the patients (and their families) are enriched with more information about their personal situation so that they are stronger in the conversations to determine the right approach.
We firmly believe that this 'empowerment' through knowledge in an accessible language in many situations can lead to less stress, fewer wrong treatments, and timely interventions! As a result, the quality of life of these people and their loved ones increases! 

What is WaihonaPedia

A WaihonaPedia platform has the following four pillars:

1. Knowledge development
The knowledge of the patient/parents/carers must be developed. Here, experts and experience experts work together in a wiki where the aim is to educate the patient/parent/carer to become an expert. The accessibility of the language is very important. Simply copying a medical article is not enough. The use of understandable language, illustrations and, where necessary, video, will have to be abundantly used. This knowledge can grow in this way and in the case of very rare diseases a start can be made for a standard of care. There are already examples of this. The Cornelia the Lange syndrome world federation (many national communities working together), for example, has taken important steps towards a standard of care supported by Waihonapedia. And the Stichting Pitt-Hopkins Syndrome will/will start to create a lay-version supported by WaihonaPedia
2. Experience stories
Living with a rare dieases is something you must learn, it is important that successful experiences (and what one has learned from that) are shared. By sharing with space for dialogue (forum), the digital world can become a good alternative to meetings. Especially in the case of rare diseases and the additional burden of care, meetings are expensive (because they are international) and more difficult.  An important difference with, for example, Facebook, where such discussions can also be held, is that within WaihonaPedia, by topic, the information out of these discussions will be organized in the indexed and searchable database and privacy is better guaranteed. For parts of discussions that become public, Waihonapedia has another important advantage: the discussions remain findable, where this becomes more and more difficult at Facebook over the course of time.
3. Question & Answer
Knowledge about the conditions is never finished and each person is unique. Asking questions to the experts who have themselves developed knowledge is very important. Frequently asked questions can lead to new theory, which in turn can lead to improved knowledge. Each disease-community has its own network of medical and other specialists and often parents who have been dealing with the disease for a long time and have become experts in their field, even more so than the medical experts in some cases. By organising their own network, these communities can quickly send their questions to the right experts. These experts can then give their answers. These questions and answers can then be anonymised and published as asked questions and answers. In this way, the 'ask the expert' also has a library function. Someone can then see whether their question has already been asked if asking the question themselves is still too confrontational, for example. Or someone may want to look at what other people are asking to see what's going on in a topic you are interested in. 

Communities will also discover unmet needs; together with for example research: programs can be developed to do something about these unmet needs! And you might discover solutions that need to be communicated to the wider audience!

This module is [[fully operational and communities are in different phases of implementation and use.

We would like to see some examples of live Questions and Answers...

4. Questionnaires/score cards
The above knowledge about the patient/person with a disability (stories of experience and questions) will be coloured by the personal (regional) environment and feelings or emotions. It is difficult to compare and how to apply it to the personal situation. In order to get to know the person with a certain diagnosis better, we, in close collaboration with centre's of expertise, have developed questionnaires. In addition, scorecards can be used to keep track of how a certain development and/or behaviour progresses over time. 

These questionnaires are fully operational and some of them have already been translated into other languages. We have orgaized the questionnaires to be language independant, this means you can compare with friends from other countries! The questionnaires can also be used for intake discussions within expertise centres for rare diseases or care centre's. Many patients come only a few times, so the it is important the centre is well prepared and can understand the patient situation prior to the visit via Waihonapedia. 

Imagine if we have hundreds of patients preparing their visits via WaihonaPedia; what a TREASURE of information would that be. A hallmark service is the alert card, the information of the questionnaires can be presented in all world languages, so if you are in a emergency situation the local doctor can understand the patient background much better.

WaihonaPedia Logo staand

The WaihonaPedia logo consists of 4 dynamic puzzle pieces that are in motion.
Together they form a (world)globe and represent the international connection with the 4 target stakeholders. In addition, the logo represents the WaihonaPedia process consisting of 4 steps in our approach and the 4 tools used on the platform

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

To successfully implement a WaihonaPedia system, both the patient/family/carer and the knowledge expert must be involved.

Energy of the family

We want to do this in the middle of a world that demands more self-reliance, and strive for more value in cooperation, less top-down, more equality between (professional) experts and patients and their families.

What is a Wiki

Data that together form a whole and a source of information are often referred to as encyclopaedias. You can find everything you need to know about them. Since the introduction of the internet, a new encyclopedia has developed with the world-famous name WikipediA?. Wiki is a word from the Hawai-an language and sort-of-means doing something quickly together! In analogy Waihona is from the Hawai-an language as well and sort-of-means "a treasure" you hold dearly (like a baby). WaihonaPedia means a treasure of experience that is being built up. In the past, experience was used to tell stories in the newsletters, the back-and-forth notebook that was shared with the school or daycare centre, through conversations with doctors, or scientific articles. Now there is the internet and the wiki system.

  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. 

About the website contents


All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: wiki@waihonapedia.org