Tobias Hartz*, Department for Medical Informatics and Biomathematics, Münster, Germany Anika Winkel, Department for Medical Informatics and Biomathematics, Münster, Germany Frank Ãœckert, Department for Medical Informatics and Biomathematics, Münster, Germany Track: Research Presentation Topic: Web 2.0 approaches for behaviour change, public health and biosurveillance Presentation Type: Oral presentation Submission Type: Single Presentation Building: MECC Room: 0.9 Athens Date: 2010-11-30 03:30 PM – 05:00 PM Last modified: 2010-09-21

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Background: In Germany every year around 1750 children develop cancer before the age of 19. Often directly after the diagnosis patients and their family members search for further information online. Even though there are many reliable information sites, even for different age groups, it is often impossible to find and to differentiate between useful and correct sites and sites which are not helpful due to the information overloads the internet offers. Further, patients and family members look for people who go through similar situations and with whom they can talk to and exchange their experiences, fears and hopes.

Objective: With the help of a new implemented web portal for information in the pediatric oncology (PIPO) patients and their family members are offered both a starting point to find substantive information concerning oncological diseases and a place to find like-minded and affected people. It includes web 2.0 tools such as chat, blogs, groups, friend list, rating system, and personalized search engine. Those tools might help to form a new web community for pediatric oncology. In two research studies this portal shall help to identify the positive and negative effects of web 2.0 tools and explore the potential and limits of web communities in the field of medicine.

Methods: PIPO is based on the open source content management platform (drupal). Equipped with the needed features and its modular design it has been possible to create easily a community-driven website. Additional customized functions have been implemented and added. A Google custom search engine has been integrated. An own sort and rating algorithm differentiates between three different groups of users: young patients, family members and professional experts. The system is auto adaptive. It learns from the interaction of its users. For research studies users answer an additional questionnaire concerning the usage of web 2.0 tools and community effects.

Results: Based on previous research studies in the context of a similar project (KONI: an information platform, which offers comprehensive oncological information for children between 8 and 14 years), it has been evident that children as well as their family members expressed interest for the possibility to exchange information with other patients and their beloved ones. In detail, 64 patients and 119 parents were asked if a chat function would be a good addition to the existing information site. Around 40 % of the patients and around 60 % of parents said that would be a useful addition.

Conclusions: PIPO offers the tools to become a potential accepted community platform and meeting place for oncological patients. Information suitable to the different groups is automatically filtered; substantial information sites of third parties are linked. In summer 2010 the portal has been introduced in the department of pediatric oncology of the university hospital. Through this pilot and the research work we hope that the benefits of web 2.0 tools and the potential of web communities as well as their limits for the medical field will be more understood.