13
Jun
2016

Waihonapedia, Treasures for higher quality of life.

Last modified by Gerritjan Koekkoek on 2016/06/13 09:04
13
Jun
2016

Waihonapedia, Treasures for higher quality of life.

Last modified by Gerritjan Koekkoek on 2016/06/13 09:04
See and Learn, Know and Share 

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.

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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. These reports are based on the unique features and defects of that child/person.
This is beyond so-called 'standardized care guides for the diagnosed decease'. The reports will be constructed based on the standardized guide, but adjusted based on input of the care-taker. In this way a 'Personalized Care Guide' based on official standard guide can be created and taken to the care or cure (doctor).
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 personal-book with a 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.

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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

Web Infrastructure should have little impact on operating cost

A WaihonaPedia system will re-use, if possible, existing website infrastructure. Upgrades might be required, but it should be avoided that a group has to work with multiple dis-connected sources of information.

Data collection should be easy and simple

Where possibles care-takers should be able to write down their own data. This requires a user-friendliness and simplicity to ensure the biggest possible user-base. 

Privacy

Protection of the WaihonaPedia data should ensure that each care-taker 'owns' the data collected by him/her. It should not be able that other people can steal,get the data. We intend that caretakers can SEND data to others. SENDING can be that one actively allows another person to see a page, or a page is transformed to PDF or data is send in a structured format (Excel, XML or other)
Website will be secured by electronic key's. Only people with that key can access the data. The electronic key will also ensure that the user can safely exchange (write/read) data with the database without someone else being able to tap that flow of data.

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.

Internationalization

For rare deceases it could be allowed to have data collection in a national language, but for Ultra-Rare deceases the data-collection will be internationalized. In other words; a person from Holland will see the data in Dutch and when he or she shares that same data with somebody from France the receiver will read the same data in French

Diagnostic data

It must be ensured that a caretaker will be able to precisely describe the diagnosis (or features of the person). This will be modular in nature, so caretaker does not need to specify everything in one time, but based on need from researcher or advise required.
Especially for building enriched reports the quality and completeness of the diagnostic data must qualify to the criteria

Total Life based data

The value of data collected over time, during the life of the person is of enormous value. If data is collected/updated in a certain frequency one can see 'development' of the person. This development can be of great value for people seeking HOPE for their individual who has not yet reached certain milestones. It will also allow researchers to see trends they can analyze.

Structured and Semi structured

Some information can be collected in a form (like a questionnaire). But some information  requires a story to be told. For this we opt for eXtended Wiki. The wiki can hold stories, guides, advises. The extension can hold structured data that can be integrated in the stories

Invitations for research

As stated in Privacy researchers can not get the data. They must invite caretakers to collect and share. This will be much like traditional paper based questionnaires. There must be a letter where researcher describes his/her goal, what is done with data, promise to keep the data safe. Caretakers can respond in much the same way as with paper based questionnaires.

email support

It will be possible to request support by email.

  • Functional support on how to use the WaihonaPedia system (volunteers)
  • Care/Cure support from experts
  • Data support from researchers requesting questionnaires to be completed

Initial data collection

The first time somebody participates in WaihonaPedia a certain amount of base information (profile) must be captured. With each additional module this profile information will be re-used. So effort to use additional modules or participation with new questionnaires will be much lower. The profile can be modular extended.
The initial information could take multiple hours. People must be informed at the beginning and during the input clear indicators of how much more time is required must be provided.

Access to information

At all times caretakers must be able to read back the data in a easy format (e.g. PDF of e-reader format). They can take that 'PDF' to doctors or other advisors for consults.

Modularity

As we have a special interest in rare, complex deceases that requires a multi-discplinairy approach we envision modular data collections.
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Logo for WaihonaPedia still under construction
Caretakers can incremental complete the information-puzzle of the person they care for.

Trust

Caretakers that participate in a WaihonaPedia can be ensured that their interests are well guarded. As they are developed by groups that are caretakers themselves, have a non-profit attitude and are recognized as representatives for that decease in their country. 

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.

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