Finding new answers

Abstract:

Finding new answers on WaihonaPedia:
an interactive platform for families, professionals and researchers

Authors: 

S.A. Huisman, MD, Prinsenstichting, Purmerend, The Netherlands

Prof. R.C.M. Hennekam, MD PhD, Pediatrics and Translational Genetics, Department of Pediatrics, Academic Medical Center, University of Amsterdam

G.J.F. Koekkoek, Innovator, WaihonaPedia.org, 's-Hertogenbosch, The Netherlands

Both Huisman, Hennekam and Koekkoek have been associated to 'Vereniging Cornelia de Lange syndroom and Cornelia de Lange World Federation as Medical Advisors, President of Scientific Advisory Committee and as Chairman of the CdLS World Federation

BACKGROUND

CdLS is one of very many rare disorders. People with CdLS, their families and carers have have to face lifelong challenges. The main question is: how can we provide optimal care for the best quality of life? Families urge the necessity for speed in evolving the best strategies to enhance individual development and to overcome health and behavioral problems.  

Although there is increasing interest for rare disorders, funding and manpower for research is scarce and time until implementation of new knowledge can be long. How can we mobilize and involve the crowd knowledge of families and friends? How can we use cost efficient modern media for international collaboration, scientific data gathering and knowledge management? 

We need a collaborative environment to:

  • offer current easily accessible knowledge for families and carers based on scientific research and expert opinions
  • raise new research questions  
  • generate new knowledge from data of families and carers 

The World federation (CdLS World) owns and maintains a wiki (from Hawaiian ‘quick’, ‘fast’). The primary goal was to support the International CdLS Ask the Expert in all the world languages. The Dutch CdLS support group has recognized the potential of the federation wiki which is of a new class of Wiki (XWiki). Compared to the all famous WikiPedia which all of us use as a leading encyclopedia a XWiki adds capabilities like Social Networking, Database features while maintaining it's FREE pricing. With these possibilities we can build WaihonpaPedia (waihona = Hawaiian for ‘treasury’) rare disorders.

METHODS

Together with the Dutch CdLS support group we have built a wiki to:

  • write the current knowledge on CdLS in lay terms
  • add questions about issues that are uncertain of unknown
  • translate in different languages
  • invite families, professionals and Scientific Advisory Committee to comment
  • add questionnaires and scorecards 
  • use the data for daily care and for research
  • add new knowledge in lay terms
  • stimulate and seduce families to fill in the questionnaires and score cards in time-intervals
  • re-translate in languages in time-intervals

    The wiki will help 4 types of stakeholders by being able to See, Learn, Know and Share
  1. Families and friends,
  2. Schools and care centers,
  3. Hospitals and centers of expertise,
  4. Researchers

The wiki supports all of this by offering 4 tools

  1. Stories that provide a closer look into the daily lives of individuals dealing with challenges and providing joy and hope
  2. Questions and Answers that show previously asked questions and best practices, but also, by collecting statistics and value indicators, where practices need to be improved
  3. Data collection, that provides questionnaires and scorecards for life-long data collection of individuals with CdLS that can be used for research and care purposes
  4. Knowledge rooms where experts (both professional and/or by experience) co-create new or updated knowledge offering families the latest insights and alternative options. 

RESULTS

We will present a glimpse of the online platform WaihonaPedia and then focus on the different tools to show how we use the knowledge management system to find and implement new answers. We will discuss the possibilities and challenges.

  • wiki with easily accessible and up-to-date information for families and carers
  • data that meet the wishes and needs of CdLS individuals and families for the best possible care 
  • data for the basis of a ‘SIB in CdLS guideline’ for diagnostics, treatment, prevention (for professionals)

CONCLUSION

Wiki provides a cost efficient knowledge management system that serves families, professionals and researchers working closely together.
We will keep you informed about the world wide use and hope you will participate! 

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