PopMedNet: Collecting and Using Metadata in Distributed Research Networks
metadata, distributed research
Background/Aims: In 2007, the PopMedNet™ platform was developed through support from Agency for Healthcare Research and Quality to facilitate multisite distributed research. This open-source software platform has been deployed in and currently supports five large-scale distributed research networks, including the Food and Drug Administration (FDA) Mini-Sentinel, CRNnet and PCORnet, with over 100 participating sites. Continued PopMedNet software development has been supported by the FDA, National Institutes of Health, Office of the National Coordinator and Patient-Centered Outcomes Research Institute, creating a scalable and extensible informatics platform that meets the needs of multiple research networks. These PopMedNet networks identified a need for improved capture and use of network metadata to enhance network operations and collaboration.
Methods: As networks have grown in size and complexity, it is increasingly important to improve the capture and use of institutional, data source and query metadata. Organizational metadata includes information such as the organizational descriptions (e.g. health plan, hospital) available data resources (e.g. claims, registries), local expertise, data models supported and willingness to participate in different types of research activities (e.g. clinical trials, observational, etc.). Data source metadata focuses on a specific resource and includes information such as data model, data elements and periods of data capture. Query metadata include information such as query descriptions, requester and dates. New PopMedNet functionality was implemented in 2014 that allows for the capturing and reporting of network metadata.
Results: PopMedNet profile “input screens” for organizations, data sources and DataMarts (queryable data sources) were expanded to capture standardized information about each of these domains. When available, existing metadata standards were adopted. Also, the query input screen was expanded to capture additional query metadata. The PopMedNet system was expanded to allow users to search and display the metadata. Users can now search for organizations, data resources or specific queries that meet specific criteria (based on captured metadata). Access control layers managed how much information specific users can view.
Discussion: As the adoption and use of distributed networks grow, there is an increasing need to capture network metadata to improve collaboration and enable network learning. The value of distributed networks will grow with the ability to capture and use network and query metadata.
Malenfant JM, Davies M, Swan B, Brown J. PopMedNet: Collecting and Using Metadata in Distributed Research Networks. J Patient Cent Res Rev 2015;2:119-120. http://dx.doi.org/10.17294/2330-0698.1149