A Model for the Electronic Support of Practice-Based Research Networks

Abstract

PURPOSEThe principal goal of the electronic Primary Care Research Network (ePCRN) is to enable the development of an electronic infrastructure to support clinical research activities in primary care practice-based research networks (PBRNs). We describe the model that the ePCRN developed to enhance the growth and to expand the reach of PBRN research.METHODS Use cases and activity diagrams were developed from interviews with key informants from 11 PBRNs from the United States and United Kingdom. Discrete functions were identifi ed and aggregated into logical components. Interaction diagrams were created, and an overall composite diagram was constructed describing the proposed software behavior. Software for each component was written and aggregated, and the resulting prototype application was pilot tested for feasibility. A practical model was then created by separating application activities into distinct software packages based on existing PBRN business rules, hardware requirements, network requirements, and security concerns. RESULTSWe present an information architecture that provides for essential interactions, activities, data fl ows, and structural elements necessary for providing support for PBRN translational research activities. The model describes research information exchange between investigators and clusters of independent data sites supported by a contracted research director. The model was designed to support recruitment for clinical trials, collection of aggregated anonymous data, and retrieval of identifi able data from previously consented patients across hundreds of practices. CONCLUSIONSThe proposed model advances our understanding of the fundamental roles and activities of PBRNs and defi nes the information exchange commonly used by PBRNs to successfully engage community health care clinicians in translational research activities. By describing the network architecture in a language familiar to that used by software developers, the model provides an important foundation for the development of electronic support for essential PBRN research activities.

A Review of 50-Years of International Literature on the Internal Environment of Building Practice-Based Research Networks (PBRNs)

“…We evaluated 37 PBRNs from the USA, 15 from the UK, 10 from Australia, 4 from Belgium (of which 2 were pilot projects), 6 from the Netherlands, 3 from Ireland, 2 from Switzerland, 2 from New Zealand, 2 from Canada, and 1 PBRN from Finland, Germany, Italy, Singapore, South Africa, and Sweden. ASPN and e-PCRN were binational and were established with contributors from the USA/Canada, [35][36][37] and USA/UK, 23,[38][39][40] respectively and 4 were international networks. [41][42][43][44][45] PBRNs could be characterized as local, regional, statewide, interstate, national, or international.…”

Implementing partnership-driven clinical federated electronic health record data sharing networks

“…A search was conducted to identify a replacement solution for the VDW, which led to e-PCRN. [34–35] The biomedical informatics team downloaded the e-PCRN software for pilot test and the test was unsuccessful, with the software deemed non-functional. Furthermore, the governance requirements dictated from the feasibility studies required on-site validation of all queries, which e-PCRN did not support and co-development of the software to add this feature was untenable.…”

Implementation of a Health Data-Sharing Infrastructure Across Diverse Primary Care Organizations

“…With 42.5% (Hsaio et al, 2013) of primary care physicians in 2012 using electronic health record (EHR) systems and new funding programs offering support for innovative ways to leverage EHR data for research and quality improvement (Agency for Healthcare Research and Quality, n.d.), the development of health data-sharing architectures within PBRNs is a natural extension of the PBRN research infrastructure. Researchers have identified technical challenges and suggest approaches to address challenges inherent in developing these data-sharing infrastructures (Delaney et al, 2012; Mold et al, 2012; Pace & Staton, 2005; Pace et al, 2009; Peterson et al, 2012;). However, nontechnical implementation barriers are less well understood, especially when data sharing is implemented across independent practices with disparate EHR systems.…”