NIH Roadmap Clinical Research Networks and NECTAR. Meeting Summary. Clinical Research Networks: Building the Foundation for Health Care Transformation. Held on May 8, 2008 in Bethesda, MD

摘要

Dr. Barbara Alving provided a brief welcome and introduction to the final meeting of the Roadmap Clinical Research Investigators. She spoke about the original goal of the Roadmap Clinical Research National Electronics Clinical Trials and Research (NECTAR) network in promoting and expanding common informatics platforms to allow complex research programs to benefit so that clinical studies and trials can be conducted more effectively. The transition of NECTAR has allowed for the development of the Clinical and Translational Science Awards (CTSA) and the expansion into community outreach, training, and informatics. Dr. Alving commented that the Clinical Research Network website is linked to the CTSA website to inform others of how work needs to be done. In her concluding remarks, Dr Alving noted that the work evolved from NECTAR is providing a higher standard for the work of the CTSAs and will continue to play a vital role in the future work of research. Dr. Silverstein introduced the topic by presenting the technological challenges of moving from interfaces to (service-oriented) architectures, of moving data to warehouses or federated systems where data remains close to its source, of standards - particularly controlled vocabularies and shared information models and of collaboration systems which could permit researchers to work on common sources of information. Dr. Silverstein elaborated on the primacy and challenge of context and what may be lost in the interchange that is misleading. He illustrated the point in examples of the differences between inpatient and outpatient data, data federation may gain additional unanticipated context when needed by going back to the source, and the importance of bottom up standard data elements and metadata that support understanding of provenance. He summarized the socio-technological challenges that exist within systems and policies and the conflicting need for standards as well as flexibility, as well as collecting data with a purpose, the local legal considerations and virtual organizations.