Kei Cheung*, Yale Center for Medical Informatics, New Haven, United States Arron Mitchell*, Internal Medicine, Yale University School of Medicine, New Haven, United States Steven Greenberg, Jobs4point0.com, LLC, Westport, United States Perry Miller, Yale Center for Medical Informatics, New Haven, United States Geoffrey Chupp, Internal Medicine, Yale University School of Medicine, New Haven, United States Track: Research Presentation Topic: Collaborative biomedical research, academic / scholarly communication, publishing and peer review Presentation Type: Oral presentation Submission Type: Single Presentation Building: MaRS Centre, 101 College Street, Toronto, Canada Room: Auditorium Date: 2009-09-18 01:30 PM – 03:00 PM Last modified: 2009-08-13

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Background: The interest in adopting and exploring the use of Web 2.0 in biomedicine has been increasing. Web 2.0 includes characteristics such as rich user experience, user participation, dynamic content, openness, freedom, and collective intelligence. It transforms the role of patients, doctors, and scientists into that of e-patients, e-physicians, and e-scientists. In this new role, information consumers do not only make use of the advent of the Internet to actively gather information of particular interest to them for making informed decisions, but they also make social connections with one another based on their common interests and goals. Objective: We have developed a prototype Web 2.0 site called “OrphanData.org” (ODDO) that promotes scientific collaboration in a manner that preserves the scientific process and scientists’ interests while efficiently and deliberately promoting (using Web 2.0 technologies) the removal of geographic and social barriers. ODDO provides an intellectually secure website designed to help scientists collaborate and share resources early in the scientific process, user centric, as it was conceived by a researcher to fill a major gap he/she encountered in his/her collaborative environment. Methods: In developing ODDO, we employ a process called “data driven collaboration” (DDC). In contrast to socially driven networking, DDC focuses on facilitating interdisciplinary and transdisciplinary collaborations based primarily on a shared interest in a particular gene, disease and/or pathway. The data/resource is the catalyst between the researchers, not the social profile. While this concept is simple, it has the potential to dramatically improve resource sharing and transdisciplinary scientific collaboration. Results: The initial version of this open access website has been launched and is available to the global scientific community (http://orphandata.org). Through this website, researchers can securely and efficiently find collaborators across disciplines, share data and/or reagents listed by gene, pathway, and/or disease. Listing researchers can adjust the amount of information that is posted (or not), control sharing, and through an internal email system can very quickly address inquiries from potential collaborators about the listing. Conclusions: The OrphanData.org website is unique, simple, secure and efficient to use. It allows researchers to develop collaborations, share resources and knowledge in the Web 2.0 spirit.
Acknowledgments: This work is support in part by NIH grant KL2 RR024138.