Vragenlijsten en Score kaarten

The divesity between different rare diseases is enormous. And the same is true for diversity within a diseasse.

To provide the right care and cure-treatments is very dependant on knowing in detail. Patients and family members know themselves best as they observe 24 hours a day. 

If you visit a professional you are often asked to tell more and sometimes you are asked to provide a form filled in with data about your condition. Especially if you need to visit different people this becomes a data management issue; either your memory is very good then providing the same information is at least time consuming! Or you siimply forget, sometimes in the heat of the situation the critical information.

Questionnaires

The WaihonaPedia questionaires are objective questions about your situation. The same questions are asked to all people on WaihonaPedia. We avoid to being disease specific as much as possible. We work on providing questionairres in different topic-domains. Currently we have a extensive set of questionairres taht provide an overview from head-to-toe and from mind to behaviour. We also provide a topic domain about difficult, self injourous behavior. We are using a method with what wecan extend this to other topic domains.

The result of questionaires is that as a patient or parent or caregiver is that you give all parts some attention and that you directly 'feel' how your profile looks, where are my problems.

[insert quote of RTS-dad]

Considerations why we need Questionairres and Scorecards

• it is important that there is reliable data of as many people as possible from the same specific, rare condition.
• these data should not only be a snapshot of everything known, but should also be kept over a longer period, for each individual.
• the natural course of each individual with such a rare condition should be as clear as possible.
• these data should be shared, using all forms of social media that make sense
• Uniform questionnaires should be used wherever possible, so that different diseases can also be compared. What can be done in the same way by associations together we do together
• but what has to be done separately, happens separately: each participating community has to recognize itself completely in it: there has to be  space for being different, and space for the peculiarities of one individual.  
• It must be possible to share these data so that we can improve existing knowledge. 
• The technical approach we use must be open and free of charge (Open Source). In this way, we can make maximum use of the scarce financial resources for information development. 
• The system must work in such a way that patients and their families/carers can work themselves, independently of IT staff and professionals.
• The information we obtain through a WaihonaPedia should lead to patients and their families being able to enter into a dialogue with doctors and other healthcare providers, because they have the best possible information. This will have a wonderful effect on the quality of care and therefore quality of life.
• We expect a much more dynamic and real collaboration between Patients and Science that will result in faster development of research and thus faster improvement of therapies and treatments.

Scorecards

They are especially an extension to questionairs but focused at capturing a series of related data. You could score the daily foodintake, measure the weight on a regular basis.

As a example we show a questionnaire (part of) and the related scorecard.

Where was your child born?

At the hospital

How did the process of being born go?

Spontaneously, with the head first

Weight at the time of birth (please only fill in if you are reasonably sure about the weight)
;

Scorecard Weights

Implementing the questionairres or scorecards in your community

Our experience shows that filling in questionaires need a 'reward'. The person spending the time needs to have the feeling before hand that it will be worth the effort, otherwise they decide to put their energy into other tasks. We experimented with the following two 'rewards';

• Alertcard
• Expert preparation when visiting the doctor

Alertcard

The reward is that you feel empowered before going on holiday. The fear is that you find yourself in an emergency situation where the people do not know anything about your disease and more urhently about your situation. The 'reward' is that you can have a card with information with you. This card can be in the language of your destiny. By this you feel more secure.

Expert preparation when visiting the doctor

Especially if you visit a centre of expertise there is need of information. You can provide the information ad-hoc! But this is stresful. It is better to prepare by providing the information beforehand. And it will allow that the centre studies the information before you come. In this way they can make sure the right experts will be presnt and the experts are cross-discipline informed.
Your reward is a rewarding visit to the centre of expertise.

Research

When you have qualitative information about your situation it becomes really valuable for research. When 100 people like you share that information it becomes a TREASURE. What about increasing our own data management capabilities. If it is very good, we can share all our information on our hands on any moment as often as we would like without effort. Digital copies only require you to push a button called: Share!