Use of informatics and information technologies in the clinical research enterprise within US academic medical centers: Progress and challenges from 2005 to 2007

Background: Data on the state of information systems infrastructures used in the clinical research enterprise of academic medical centers are limited and mostly anecdotal. What has been published is slowly beginning to make important distinctions, such as clinical trials as a specialized form of clinical research and between Informatics in an academic setting from health care information technology. However, this field continues to undergo fundamental changes, accelerated by the National Institutes of Health's creation of Clinical and Translational Science Awards to build a new home for biomedical research. Methods: We surveyed all Clinical Research Forum member institutions regarding their enterprise infrastructure and use of information systems in support of clinical research. The questions in this on-line study expanded on one first done in 2005. Of the 52 sites invited, 19 (37%) responded. We analyzed the responses and also made matched comparisons for those organizations that participated in both surveys. Results: Although there continues to be conceptual agreement on information system elements for the clinical research enterprise, no single institution achieved the ideal, a similar result to the 2005 survey. Indeed, little progress was made over the past 2 years at most locations other than in information technology planning, strategy, and governance. Conclusions: There is increased recognition of the importance of information systems infrastructure and expertise for biomedical research, but the needs are accelerating much faster than institutions can build or pay for. A much greater realization of and innovative solution for this growing chasm is urgently required.