Participation by WaihonaPedia method
How does it work
After logging in, you will see that the navigation bar that welcomes you.
Navigation Bar
- Notice that the login link has been changed to a logout link
- Dashboard button added
- Added a (place for your) Profile picture
- A learn about... link to the menu (Meet us, News and events) was (will be) added
Participation side of the platform
By clicking on the Dashboard you will get to the Participation side of the platform.
We offer each participant 4 areas for participation, but also with strong personal benefit. We have found that people need a personal benefit to justify the energy they put into participation;
Living with a rare dieases is something you must learn, it is important that experiences (and what one has learned; both positive and negative) are shared. By sharing with space for dialogue (comments), the digital world can become a good alternative to sharing a story in a real meetings. Especially in the case of rare diseases and the additional burden of care, real meetings are expensive (because they often are international to get enough people on the table) and more difficult.
An important difference with, for example, Facebook, where you can also share your story, is that within WaihonaPedia, by topic, the information out of the story will be indexed and findable by a search-able database. (FAIR data story). Privacy concerns are much better managed as well.
For parts of the story that become public, Waihonapedia has another important advantage: the story remains findable (FAIR), where this becomes more and more difficult at Facebook over the course of time.
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!
