Extending the Capabilities and Reach of EMERSE in Support of Cancer Research

EMERSE STATEMENT OF WORK: Networking Assumption: While activating at least one of the networking components is encouraged, it is not required to participate in this effort. However, we do expect that at a minimum, all sites will provide detailed feedback to UM about local institutional regulations, resource constraints, competing priorities, etc. This information will serve as “lessons learned” which will allow UM to better understand the motivators and challenges regarding network participation, and how to improve the viability and acceptability of the network. University of Kentucky will participate in the network capabilities offered by EMERSE. University of Kentucky will work with UM and other participating sites to test and implement network components. The goal of this work is to enable a network to facilitate cancer research and collaboration across EMERSE sites. EMERSE Network Implementation There are two main components available through the EMERSE network functionality: 1. The ability for a user to obtain de-identified, aggregate, obfuscated counts of patients via a query applied against other sites participating in the network 2. The capacity for saved sets of search terms (called "saved searches" or "bundles") to be shared with other users across sites University of Kentucky may apply grant funds to accomplish tasks such as: 1. Implementing one or both of the network capabilities (noted above) 2. Executing the Networking Participation Agreement (required for participation in the network) 3. Pursuing additional IRB and/or IT security/compliance approvals that may be applicable 4. Obtaining and providing UM with the public IP addresses of [Site’s] EMERSE instance 5. Testing the connection to the network 6. Assessing the value of the network among users 7. Obtaining feedback from users about functionality that would increase the value of the network University of Kentucky will work closely with UM and share learnings and feedback obtained throughout the network review, approval, and implementation process (technical, data-related, usage, documentation, etc.). University of Kentucky will participate in evaluation activities (e.g., interviews, surveys, usability tests) to gauge the usefulness of network components. These activities will help to provide insights into the data needs for network-based research and to obtain both user and leadership perspectives of the network capabilities. Work will be accomplished via monthly meetings with additional communications to occur via non-synchronous approaches (e.g., e-mail, Slack messaging) as needed. University of Kentucky will participate in community activities (e.g., regular EMERSE meetings) which will be used as a forum to share information, best practices and provide training. If, after careful due diligence, local leadership or other internal constraints will not permit the EMERSE networking functionality to be turned on, University of Kentucky will provide a detailed report explaining the reasons why it was declined and possible future recommendations to make it more acceptable for institutional approval.