Waihonapedia, Treasures for higher quality of life.

Description of innovation

Finding answers to problems of people with rare disorders is hindered by lack of information, poor access to experts and slow development of effective treatment protocols (because of low numbers of people as well as financial resources). However, the internet has opened unprecedented possibilities to access and share information with peers and professionals worldwide. Patient support groups already act online and have their digital infrastructure well in place: they build their own website, share experiences on Facebook, and use question-answer portals for communication with experts. Empowerment of people with rare disorders can be further accelerated by building a so-called WaihonaPedia together with these experts.

European Union, USA and other global organizations recognize the problemt

It is globally recognized that rare-disorders are not handled very well in the current health-care system. While great progress is made in treating and caring on specifics topics (specialism/focus) and great investments are made on 'big in numbers' deceases; it is recognized many treatment and care-errors are made in rare deceases. This is even worse in complex, multi-topic deceases that are a result of a genetic disorder; like the Cornelia de Lange syndrome.
Experts that are good in their specialism often do not realize, have the expertise, on the 'flanking' topics in such a complex decease. Agression in CDLS is not normal; but because of lack of communication skills in these people and lack of understanding of the medical issues the person might suffer from a wrong diagnosis is made. Often parents/caretakers/parent groups are better informed about these flanking topic's and can influence the expert for the better. But to do this they need to be educated, empowered by information they can understand!

For our innovation we basically allow parents/caretakers to create a WikiPedia-like pages for each individual affected with CdLS. This personalized wiki contains of a unique combination of (semi)structured reports collected during the lifespan of the patient. The information can be shared with others and the patient-mandated person is in charge when and with whom. The wiki pages can be connected with each other and with the general CdLS wiki, all together making up a book with comprehensive and actual information network. The personal wiki page has a multidimensional function. Families can write down personal experiences and fill in questionnaires and read them back later or share them with others. They can also collect valuable syndrome specific and general information and make it available for others. And last but not least: they can fill in pre-structured, standardized fields of information for scientific research purposes. All functions serve the aim to enhance management development for better quality of life. The families are in charge of their own wikis for information development: they own them, are responsible for its use and to fill in actual information. WaihonaPedia (Waihona=treasure) consists of the whole of personalized wikis and the asset of actual information together.

As a example:
Behavior can be very challenging in CdLS. From world-leading researchers on this topic we obtained carefully crafted questionnaires that can give patient, care professionals and researchers better insight in the behavior. This answers to the questionnaire are not collected by the researchers like traditionally, but stay on the personal wiki pages as part of his personal but also syndrome wide WaihonaPedia. When the patients ask care professionals or researchers to find answers to a problem, they can simply authorize them to collect a copy of specific and relevant parts of the WaihonaPedia for care or research purposes. This way once entered information can be used eternally without the need for patients to fill in questionnaires or to answer the same questions over and over again. 

System characteristics

collaboration

The system should be applicable for any rare disorder. These disorders can work together where possible; like using the same information structure, use or design standard formats for information-exchange.
But it will also provide room for the specifics of a particular disorder like Cornelia de Lange syndrome.

Information collections

The primary goal for information collection is to provide parents and/or caretakers high quality feedback and a help with daily life support. But stucturing the information smartly will also allow for feeding data to researchers and/or advisors.

Web Infrastructure can be shared

To run a Waihonapedia system there is a need for interactive web-server infrastructure. This would need three components; A web-server, A component that would run the application and a database where families can securely the personal data. It might be possible that a family group already has these components active, then existing infrastructure could be used. Another option is to set up a platform that can be shared (a farm).
Possible Requirements of the infrastructure:

• It is monitored for availability and attempts to hack
• regular backup's are made and stored in secure location
• low maintenance fee possible, since functional management should be possible by volunteers

Security

The infrastructure will be as secure as possible, at least secure connections from family computer to database must be possible.
The data shared with researchers will be anonymous, no reference to person with decease.
Sharing of data with other people will always be by 'sending to'. In this way families will have maximal control who has the data.

For investors

Impact of this innovation on society

5% of all newborns is estimated to have a 'rare' disorder (source: VSOP).
Our solution can be applied to any rare disorder. Empowering patients and their families and improving the quality of the dialogue with Care and Cure organizations will have significant effects on healthcare and inclusion of these people in our society.
We expect a more dynamic exchange of information and that will result in faster progress of research and likewise in faster availability of alternative treatment protocols and cure therapies.

Market size, technology and competition

In the Netherlands the group of people with rare disorders is estimated to be 1.000.000 (source: VSOP). Individuals with Cornelia de Lange syndrome account to a small group (100 - 200) in the Netherlands, but on a global scale we count > 10.000 people with this syndrome.
We are organized in a federation of national support groups around the world and have access to 5000-10.000 people affected with CdLS.
As all these national groups are 'run' by patients and families; we have TRUST build in our WaihonaPedia project. We do not sell it to patients, we are the patients.
Until now solutions that focus on these small groups are non-existing in the space of multi-disciplinary networks with experts.
As foundation for the innovation we use proven technology that only very recently has become available as so called 'open-source' which we expect will have an immensely positive impact on costs. We also see that the technology has fully embraced open-standards. This will ensure future improvements and a widespread potential of people that can collaborate.  

How will we invest

We will focus om improving use-ability, because we realize people around rare disorders and in different countries require easy-to-use WaihonaPedia.
We will also invest in securing our treasures of very personal information to protect the information against abuse and against damage.
We will focus on re-using recognized structures developed by experts; use the international accepted, standardized questionnaires as basis of the structure maintained by caretakers.