development of WaihonaPedia
A list of possible improvements for WaihonaPedia;
- Scaling out to more diseases, quick community building (becoming Eurordis/Rare Connect gold standard for genetic defined diseases (life-long) having a impact on cognition.
- Implementing for different patient groups
- Sharing data with Registries or Research Applications by means of accepted standards.
- Develop a method of quick feedback method by research (to increase "what's in it for me")
- Visualization of Positive Health markers, focus on 'what's in it for me'.
- Generating a 'Health Care Standard'
- Improving generation of questionnaires with focus on ease of use, re-use, and easy selecting scientific right variables.
Theme’s, attraction and impact
We believe all people that deal with a life-long health issue have the same general needs;
- Feel accepted and recognized (belonging)
- Access to the best information possible
- Access to experiences and best practices
- Being of value to others
Patient-groups are ideally positioned to help with all of the above, better compared to care providers or hospitals.
Traditional patient groups are pressured to adapt to the new values in society; performance, individualism, social media (internet bubbles).
WaihonaPedia believes that 'Participation' is a natural thing for individuals, it makes them less dependent on the 'board'/'executive team of a Patient group? 'Empowerment' to become the patients advocate. 'Sharing' because you are of 'Value' to others.
We also believe that software to achieve this should be 'public domain' to ensure sustainability and affordability. We also want to show that this model will be profitable to both users and service suppliers.
