STATUS: Completed Project
The Food and Drug Administration (FDA) is developing and implementing a Cross‑Network Directory Service (CNDS) that addresses the stand‑alone nature of existing distributed research networks and barriers to working across these networks. A CNDS will enable individual networks to become a community of interoperable networks, allowing end users to participate in and move around from network to network as research needs dictate. This product will enhance network scalability and enable data partners to engage with multiple networks by allowing them to decide their level of participation and their governance rules.
PROJECT PURPOSE & GOALS
This project will create an open source interoperable service that allows data partners to participate in multiple data research networks, query across the networks, and share analytic capabilities and knowledge across networks. The project will be piloted across two existing networks: FDA’s Sentinel System and PCORnet, PCORI’s National Patient‑Centered Clinical Research Network.
The project objectives are to:
Identify the key functionalities and an overarching technical design for a CNDS
Develop and test a detailed design for the CNDS with at least two existing distributed research networks
Conduct additional analyses of the robustness of the CNDS and produce user materials
PROJECT ACHIEVEMENTS & HIGHLIGHTS
The design phase of the project—which included identifying business and technical requirements, determining and describing key functionalities—was completed in 2016 and detailed in a Use Case Summary report.
The CNDS software application has been designed, built, released, and tested. In January 2018, the project team prepared the ASPE CNDS Design and Technical Documentation and the ASPE CNDS User Documentation, both of which are publically available on the Sentinel Initiative website. Beta testing of the software application was performed by a Sentinel and a PCORnet data partner. In the first round of beta testing, the data partners successfully registered and entered their metadata. In the second and final round of testing, the data partners successfully completed a round trip through Discovery (search data sources) and Communication (send and receive queries). Further, data partners were not able to discover data that the other partner did not actively make available.
The source code and documentation on how to implement the code in an existing instance of PopMedNet is publicly available on GitHub: https://github.com/PopMedNet-Team/cnds.
PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES
“Cross Network Directory Service: A Socio-technical Platform to Enable Meaningful Collaboration across Organizations” was presented as an oral presentation at the Health Care Systems Research Networks Conference in Minneapolis (April 12, 2018).
A project poster entitled “Cross Network Directory Service: Enabling Meaningful Collaboration across Organizations” was presented at the AMIA 2018 Informatics Summit in San Francisco (March 13, 2018).
Below is a list of ASPE-funded PCORTF projects that are related to this project
- Strengthening and Expanding the Community Health Applied Research Network (CHARN) Registry to Conduct Patient-Centered Outcomes Research (PCOR) - CHARN is a network of the Health Resources and Services Administration’s (HRSA) community health centers (CHCs) and universities that was established in 2010 to create an infrastructure for this safety-net community to carry out patient-centered outcomes research (PCOR), including observational and interventional studies among underserved populations, ultimately leading to improved patient care and outcomes. To realize the full potential of the CHARN infrastructure for information sharing and research, CHARN wanted to expand and enhance its data registries and to make its data available to non-CHARN researchers conducting PCOR.