Roadmaps

Roadmaps for implementation for communities on how to start with WaihonaPedia

WaihonaPedia will cause a operational change of the communities that want to participate.

We will describe the areas of typical Communities that could be impacted. We will also describe to potential impact on flanking organizations that want to help the communities like centre's of expertise, care-organizations , educational organizations.

_{The impact it can/will have on individuals that want to use WaihonaPedia is out of scope, but more about that can be found here.}

Context of the communities

The communities most interested in WaihonaPedia share a number of common characteristics.

• Lack of support, unmet needs, from the health and care organizations
• Burden of the disease, people feel stress, anxiety, insecurity because of a unknown future. These people need to think of themselves, their family, being able to have a fulfilling career, staying healthy... This results in lack of time and ability to organize an/or visit each other
• The period they need support is very long (mostly life-long as there is no cure)
• The disease is complex and impacts many areas of the body and mind (many are called a 'syndrome')

Below we show a typical mission statement of these communities:

Typical mission statements

We are determined to contribute to an early and accurate diagnosis of the Cornelia de Lange syndrome (CdLS). To support research into aspects of the syndrome, to help people with CdLS and to parents, brothers and sisters, grandparents, families help carers and doctors to make decisions based on good information 

Urgency

People with a rare disease often fight really complex struggles! Matters of survival and life are at stake. The desire to have a happy live soon becomes the single most important thing. People become resilliant and strong because of this struggle and they become more socials as in understanding that we need each other!
But that means that being involved is feeling that you must do everything to help, the unmet needs are so diverse, where to start?

Activities these communities perform

• Collect information (internationally)
• Make the information accessible, especially readability
• Discuss the information
• Share best practises, opinions
• Organize expert forums where you can ask questions

How are these activities organized ?

In order to prevent chaos and because of lack of numbers-of-people there are typical very small group of active people that organize everything. This can cause problems;

• Not able to do everything asked for -> many unmet needs
• The diversity in complex diseases is huge, often there are many answers to the same question depending on very personal characteristics (Can talk?, can walk?, can learn?, uses medications?, has religion?, family member involvement?, country/regional governance ?) -> One answer does not fit all -> many unmet needs!
• Expectations have changed by modern technology , solutions become more complex -> not meeting expectation -> unhappy community members
• Not able/willing to do something for a longer period of time -> losing buildup experience 

1. Start small (build up trust in the platform)
   1. Implement Ask the Expert
      1. Community
         1. Most asked questions
      2. Partners
   2. Implement Qeustionaires and Score Cards
      1. Community
         1. Most asked questions
         2. Detail process
      2. Partners
   3. Develop a theme, resulting in publications ready to share
      1. Community
         1. Most asked questions
      2. Partners
2. Adjust stategy for full implementation
   1. (re)Create online strategy
   2. (re)define volunteer policies
   3. (re)define community/communication strategy
   4. Publish information developped in themerooms
       

Other partners

To maintain the platform we work with several other partners (or types of partners)

1. Translators
2. Content managers
3. Web designers