Ask the Expert, extended

Professional experts agree on one thing when it comes to rare diseases: Fundamental expertise often lies in the experience-based knowledge of families and caretakers that has not (yet) been described in (official) guidelines proven by scientific research.

This means that there is a great need to test questions with experts and that experts in this context can also be experienced family members or carers.

Lifelong care

For a family and/or caregiver it is important to build up a network of care providers and medical care, in order to be able to guarantee lifelong care and quality of life. This network will often consist of people who have little or no knowledge of the condition, but who acquire a great deal of personal knowledge of the person with the condition.

Where can the family/carer and the network turn to if they have any questions?
Roughly speaking, there are two possibilities;
  • Expertise centres that have access to the worldwide network of 'professional' experts
  • Patient communities (PGOs = Patient Group Organisations)
Questions to Expertise centres that have access to the worldwide network of 'professional' experts
 For these expertise centres, it is important to thoroughly study an individual case. Only when you have all the necessary background information you can answer questions and you are also 'accountable' to the answer / advice. This is generally only possible through a labour-intensive process (costly; both in time and money), which we call 'professional consultation'.
Characteristics of the professional consultation are;
  • Based on official guidelines
  • Obtained by thorough deepening on the individual case
  • Conversations with family and carers
  • The "seeing" of the person with the condition.
  • other qualities criteria as laid down in professionals protocols
  • They are on appointment and must be prepared (see questionairres)

Questions through the Patient communities  (PGO)

Because the professional consultation often takes more time (and also money), 'consultation' with fellow-sufferers is on the rise.
Because of internet and social networks people can more easily approach this source of information. 

It is also important to realize that social studies show that in today's society people tend to Trust a 'friend' above a professional!

WaihonaPedia shows that a community (PGO) which is strengthened by an advisory committee associated with the PGO is a great addition to 'professional consultations'. Especially if the PGO has readable versions of the guidelines, an existing network of peers, knowledge about the experiences of this network of peers and if the PGO has a network of professionals, WaihonaPedia's ask the expert (e-health) is very useful!

Why is it needed?

Depending on the personal experience of a family or caregiver, there will be questions: many immediately after a diagnosis, especially abut the outlook and future of the family and more situational (thematic) in the later phase.

It turns out that people then look for something better than facebook or google (or other social networks and/or search engines)!
Where can we find 'Most asked questions' validated by the OUR COMMUNITY (Friends) and where can we ask questions if the search does not yield a precise enough answer?


Waihonapedia offers PGO's the platform to build a database of asked questions.
This database offers 2 sides;

  • Public database
  • Privat secured database (personal, only for participants)
Public database of 'ask the expert'.
This database offers an internet surfer a search function. In addition, a browse function organized to Topic's created by the PGO.
The database is filled by a periodic (e.g. every year, or every six months, or...) consultation between PGO and experts in the field. It is discussed which questions have been asked more than once (or a new question of which all are of the opinion that it is important). These questions are made into 'anonymous' versions and added to the database, marked with the relevant topic's (so that browsing also shows this question).

The WaihonaPedia search engine will automatically add the question. Also, each question (and the answer) can be made specific for the language region (medication advice in countries is not universal!). The language region will be automatically set for the internet visitor (this is often done based on settings in the browser).

Privat secured database
It is possible that somebody does not find an 'appropriate' answer.
By participating in the Community waihonapedia, you can ask a new question.
What is different here than the current email system?
At the moment many PGO's have an existing email address (or telephone number) for this case.

WaihonaPedia based Ask the Expert has extended approach. 

  1. The family asks the question and remains the owner of the question (relevant for privacy and liability reasons). It is in fact a privat 'Page' in the WaihonaPedia where the experts have access to. 
  2. The family can link in other parts of existing information , like video and completed questionaires.
  3. The Community has organised 'helpers' (Community managers) who, after permission from the family/carer, receive an alert that a new question has been asked.
  4. The Community manager assesses the question and shares the link of the question with knowledge groups. This can of course be done in steps; first share with 1st line, then share with super experts!
  5. The experts follow the link (secured) and can see and complete the answers already given. This is seen as a big advantage over mail based questions. The Community is relieved because they do not need to copy the answers and monitor the quality (self-directed quality by means of a link to the expert group).
  6. the experts and the questioner can ask the additional information or questions within the provided link (such as a wiki page)
  7. As it is part of WaihonaPedia, links can easily be shared and even included; for example, experience stories or sections within guidelines. This can speed up answering as experts have building blocks with which they can achieve a constant level of queality and realy focus on the personal specifics

Why is it 'not' a professional consultation?
Because the information exchange is only via the Internet, the expert does not have all the information. Also, 'professional experts' do not like it when it is used as a kind of Second opinion tool. The primary goal is education, the answer is NEVER an advice from which rights can be derived (disclaimer!). The goal is to educate the person asking the question and hopefully also the persons (local doctors, teachers, care providers) so dissimiliation (spreading) of knowledge is happening. And imagine what it would mean if the local expert has a solution that is considered new to the community !!!

So the Community would do well to draw up a code of conduct for 'Ask the expert'. Examples of aspects of such a code of conduct are;

  • about discussion between answerers
  • refer to the importance of 'professional consultation'.
  • Use as many references as possible to information already present on the WaihonaPedia
  • The answer must be coaching and strive to involve professionals in the immediate vicinity of the person(s) asking the question.

What is the importance of contribution by an expertise centre?
Answering all questions in a professional manner takes a lot of time. Especially the standard questions have been answered many times.
Coaching family/carers/patients works better in the preventive sphere.
The relationship with the Community and the international cooperation gives the expertise centre a positive image.

About the website contents


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