The interplay of cognition, culture, and virtual communities in translational research

Monday, September 22, 2014 — Poster Session II
4:00 p.m. – 6:00 p.m.	FAES Academic Center	NHGRI	GEN-9

* FARE Award Winner

Authors

• D.M. Mosbrook-Davis
• J.M. Guzman
• M. Sincan
• C.S. Marcum
• A.E. Links
• E.E. Lee
• D.D. Draper
• D.R. Adams
• E.F. Macnamara
• W.A. Gahl
• C.F. Boerkoel

Abstract

Throughout history, humans have learned through “distributed cognition,” a process of gaining wisdom from the shared experience of social groups in general and networks in particular. By contrast, translational research has traditionally been performed by an individual or a small group working on a few diseases over the course of their careers; this approach does not scale to address the 150 different diseases that the NIH Undiagnosed Diseases Program investigates each year. We hypothesize that integrating distinct perspectives across virtual social networks provides a scalable model for collaborative communities. To test this, we observed the structure of physical and virtual networks. We found that when individuals consider others co-equal collaborators, they build trust and develop an enthusiasm for sharing further information within their social networks. With this foundation, we created the Undiagnosed Diseases Program Integrated Collaboration System (UDPICS), a software infrastructure that enables formation of virtual communities of clinicians, researchers and collaborators, thereby generating solutions for patients with undiagnosed diseases. By unifying geographically dispersed researchers and clinicians under a single virtual social network, UDPICS provides an avenue for global exchange of information. We discuss its framework and its scalability for addressing the translational research needs of the NIH UDP.

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