WaihonaPedia, Treasures for higher quality of life.
Building treasures for rare disorders together
Sylvia Huisman (1,2), Gerritjan Koekkoek (3) (1) Translational genetics, Emma Children’s Hospital, Academic Medical Center, Amsterdam, The Netherlands (2) Prinsenstichting, Purmerend , The Netherlands (3) Dutch Cornelia de Lange Syndrome (CdLS) association
INTRODUCTION
We realize ‘the power of together‘ and that we can improve Quality of Life by gathering and sharing knowledge and experiences.
We aim to build “treasures of knowledge” for people with rare disorders and their families on the internet in partnerships with the families.
We use wiki’s [wiki = Hawaiian for ‘fast’] to provide and share information to and with the families, and to collect new data from the families through dedicated sets of questions about physical, mental and social characteristics.
We keep building a true WaihonaPedia [waihona = Hawaiian for ‘treasury’] by adding follow-up over time.
METHODS
- The platform is based on a low cost wiki structure and trust built into communities of families for families.
- The platform is owned by families; they manage and administer their own wiki for their child
- Researchers and professionals are invited to participate to collect data for research and provide new information.
The platform offers bridges to connect the people around the people with rare disorders with Information is organized multifunctionally:
- families and caregivers,
- doctors,
- schools,
- experts and
- researchers
can use and share the information efficiently
RESULTS
Gains: high numbers participants for rare disorders, participatory research that meets wishes and needs of patients/families, current accessible information for families and professionals, use of existent ICT infrastructure of patient associations, longitudinal data.
Challenges: online security and anonymity, inclusion hard-core medical information (i.e. gene mutations), maintenance.
CONCLUSION
True collaboration between families, professionals and researchers is facilitated by modern media and can lead to significant gains of data and knowledge.
