Governance, Informatics, Data Use and Quality, Research Networks, Health Information Technology, Patient-Centered Outcomes Research (PCOR), Electronic Health Record (EHR)
Introduction: The need for collaborations with bidirectional data exchange within and across distributed research networks has increased.
Currently Existing Activities: This commentary will present currently publically available activities including the Sentinel Initiative, the Patient-Centered Outcomes Research Network (PCORnet), and the NIH Research Collaboratory.
Current Technical and Governance Challenges: Even with the advances made in this arena, several technical and governance challenges remain including the evolution of clinically rich data sources and modes of care, availability of longitudinal data resources through data linkage, and the processes to share data and link data resources while ensuring privacy and proprietary control of data.
Perspective: These activities will require enhanced levels of trust between entities involved in the delivery of healthcare (Trust 2.0) in addition to the trust health plans and health systems have with patients (Trust 1.0). Recent public funding announcements and public access to data resources will likely improve the landscape of bidirectional data collaborations in distributed research.
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Haynes, Kevin; Selvam, Nandini; and Cziraky, Mark J.
"Bidirectional Data Collaborations in Distributed Research,"
eGEMs (Generating Evidence & Methods to improve patient outcomes):
2, Article 1.
Available at: http://repository.edm-forum.org/egems/vol4/iss2/1