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!

Steps to implement questioniares into your community

1. Assign an information officer in your board (is recommended for GDPR anyhow)

   This task involves knowing/understanding the questionaires available in WaihonaPedia, the officer should understand the GDPR implications of questionairres and how we ask consent of the person that will use them. Where deemed necessairy the officer should act as advisor to the WaihonaPedia team to point to improvements and keep track if and when improvement is implemented.

2. Assign your community manager(s) (if not already in place) 

   The community manager will be the contact person for your community members. The community manager will monitor requests for using the questionairres by you community members. Each month (or other if you specify this) the community manager should report the progress on participation. The WaihonaPedia foundation offers a 'professional' (hired) community manager within the standard contract. We advise you to introduce our community manager and take actions to build trust between your community members and our community manager. You can also ask us to train your own community manager (ask for a training proposal). Typically we advise communities to start with a community manager from the WaihonaPedia foundation, and after 1 or 2 years volunteers from your community can be identified that could take the role and reduce the yearly conttract costs

3. communicate availability of questionairres to your community

   especially the message: 'What's in it for us!'. This message will be wrapped into a campaign page that will make finding the appropiate questionaires easy. This means you need to develop the campaign, tgether with your community manager:

   • What's in it for us message!
   • Make photo's available to campaign page 2 x 3 photo's: 3 photo's linked to message and 3 photo's linked to 'Everybody is unique', 'A smile on every face' and 'The power of love'
   • Collect > 4 citations from your community that tell others why the 'what's in it for us message' is to be trusted 

4. Liaison with external stakeholders of the questionairres (e.g. the reseachers or other)

   When your campaign is together with external stakeholders (like a centre of expertise) the information officer (or the board) must act as advocate for the community members to make sure the collection of data is done in a prudent and GDPR compliant way. You can also ask and mandate our community manager to perform this task.

5. Extending the list of questionairres (optional!).

   New questionaires can be added. You must call for the WaihonaPedia advisory committe to propose a outline of goals and what attributes will be added. Prior to the proposal ask the WaihonaPedia team for a cost-estimate. We avise questionaires to be questions that are either asking for a choice (a list of options) or numeric values or dates as answers, avoid open questions as they do not translate.

6. translating the questionairres

   Questionairres must always be developped in English. If you have native english friends ask them to review the questionaires. Then you can translate to your native language. A short training will be required for the translator, you can ofcourse ask the foundation WaihonaPedia do organize this for you

Hier beschrijven we het proces, wat er nodig is zodat een familie in staat is om vragenlijsten en/of scorekaarten in te kunnen vullen.

Verschillende startsituaties:

1. Initiatief bij expertise centrum of patiënten groep (PGO)
   1. Iemand meldt zich aan bij de expertise poli voor één van de syndromen
   2. Iemand meldt zich per email bij het expertisecentrum aan met de vraag om aan de vragenlijsten mee te doen.
   3. Het expertisecentrum wil een geselecteerde groep families uitnodigen voor het invullen van vragenlijsten.
2. Initiatief bij Familie, verzorger of patient
   1. Is op zoek naar informatie over aandoening en vindt/ziet mogelijkheid 'vragenlijsten'
   2. Heeft gehoord over WaihonaPedia
3. … nog meer situaties???

Vervolg acties

1. Initiatief bij expertise centrum of patiënten groep (PGO)
   1. De PGO neemt betreffende familie op in community en besluit familie uit te nodigen op WaihonaPedia
   2. het expertise centrum stuurt de gegevens voor uit te nodigen mensen naar de 'uitnodiging commissie' van de PGO die deze taak heeft belegd bij stichting WaihonaPedia (Community management) ¹. 
2. Initiatief bij Familie, verzorger of patient
   1. De familie/verzorger/patient besluit 'Spontaan' te registreren op WaihonaPedia en vult 'welkom-formulier' in

1. ^ Voor privacy redenen van Families die niet willen dat hun gegevens met de PGO worden gedeeld heeft de 'uitnodiging' commissie van de PGO (lees Stichting WaihonaPedia) hiervoor een 'non-disclosure' agreement met expertise centrum getekend

Schema

_{NOTABENE: schema bevat verwijzing naar MEO; dit moet worden gelezen als 'stichting WaihonaPedia'.}

Proces beschrijvingen

Uitnodigingen

Om mensen uit te nodigen moet er een WaihonaPedia account worden aangemaakt. Dit vereist een minimaal aantal gegevens:

• familielid/verzorger/patient
  • Voor- en Achternaam 
  • Email adres om communicatie juist te laten verlopen
  • Geslacht (voor de juiste aanhef) 
  • Taal en Nationaliteit
  • Relatie tot persoon met aandoening (Bio vader, Bio Moeder, anders...)  
• Over persoon met aandoening
  • Voor- en Achternaam
  • Geslacht
  • Geboorte datum
  • Aandoening

Nadat account is aangemaakt is er een 'gebruikers-naam' en een 'wachtwoord'.
Notabene: WaihonaPedia heeft ook de mogelijkheid om gebruik te maken van password-security via Social Media, wat aantrekkelijk is omdat je dan geen extra wachtwoord behoeft te onthouden. In een uitnodiging instructie moet vermeld worden dat uitgenodigde gebruiker hier bij EERSTE keer geen gebruik van moet maken maar pas in WaihonaPedia het account moet 'koppelen' aan een Social Media account.

In de uitnodiging moet komen;

• de 'Campagne pagina' (een link naar...) voor de betreffende vragenlijsten (bv Algemene vragenlijsten Rubinstein Taybi)
• de gebruikers naam
• het 'voorlopige' wachtwoord

Spontaan

Na registratie wordt de nieuwe gebruiker een 'welkom scherm' gepresenteerd.
In dit scherm moet de belangstelling worden ingegeven en informatie over de persoon met de aandoening zodat de gegevens aan de juiste PGO ter goedkeuring kunnen worden aangeboden.

Toelichting rol Stichting WaihonaPedia

Stichting WaihonaPedia is door jullie PGO gecontracteerd middels een abonnement om het berichtenverkeer en de helpdeskfunctie rondom WaihonaPedia vorm te geven. Wanneer een partij zoals het Expertisecentrum of het bestuur van een vereniging gegevens doorgeeft, zal de stichting (Community management) een check doen of er al een account bestaat en zo niet, dan zal zij een account aanmaken en de gebruiker informeren. Verder fungeert de stichting als eerstelijns helpdesk voor vragen via email en telefoon.

Het bestuur van een vereniging of het Expertisecentrum kan ook in één keer een lijst met families aanleveren bij de stichting WaihonaPedia, bijvoorbeeld in het geval van het Expertisecentrum voor het invullen van een nieuwe vragenlijst. De stichting WaihonaPedia, community-management maakt dan deze accounts met de basisgegevens gereed. Vervolgens informeert zij de families via een persoonlijke email met de link naar een campagnepagina waarop de gewenste informatie en de uitnodigings vanuit de vereniging en/of het Expertisecentrum staat vermeld. Deze tekst kan per campagne door de vereniging/het Expertisecentrum op maat worden geschreven.

De stichting WaihonaPedia fungeert inmiddels al voor meerdere patiëntenorganisaties als ondersteuning bij informatie voorziening en lotgenoten contact. De doelstelling van de stichting is om met relatief weinig kosten korte doorlooptijden te realiseren en een goede telefonische bereikbaarheid te realiseren.