Communicating e-health research across organisational boundaries: a medical model for temporary or limited communities of practice

The growth of collaborative, cross-organisational medical research in recent years has seen extensive and impressive innovations in the use of supporting technologies. Greater collaboration, however, presents new communication challenges. Given the diverse and varied organisational structures involved, there exists the need for a common and neutral work area, in effect creating a Temporary Virtual Organisation (TVO), which respects the needs and restrictions of widely varied organisational structures without becoming dominated by any one entity. The key in the creation of a TVO is that a unique process of institutional review is required. Also, because information is drawn from a number of disparate and often incompatible information sources, a standardised communication and information flow is needed well before data is collected, transmitted and utilised by members. Review of an innovative cancer research TVO initiative demonstrates that Common Data Elements (CDEs) and enhanced metadata are key to such a process and are described here, along with critical planning lessons learned from a model genetic biomarker research consortium.