Context: Clinical data research networks require large investments in infrastructure support to maintain their abilities to extract, transform, and load data from varied data sources, expand electronic data sources and develop learning communities.
Case description: This paper outlines a sustainable business model of ongoing infrastructure support for clinical data research activities. The DARTNet Institute is a not-for-profit 501(c)(3) organization that serves as a support entity for multiple practice-based research networks. Several clinical data research networks working closely with a professional society began collaborating to support shared goals in 2008. This loose affiliation called itself the "DARTNet Collaborative." In 2011, the DARTNet Institute incorporated as an independent, not-for-profit entity. The business structure allows DARTNet to advocate for all partners without operating its own practice-based research network, serve as a legal voice for activities that overlap multiple partners, share personnel resources through service contracts between partners, and purchase low-cost (nonprofit rate) software.
Major themes: DARTNet's business model relies upon four diverse sources of revenue: (1) DARTNet licenses and provides access to a propriety software system that extracts, transforms, and loads data from all major electronic health records (EHRs) utilized in the United States, and which also provides clinical decision support for research studies; (2) DARTNet operates a recognized, national professional-society-quality improvement registry that enables organizations to fulfill Meaningful Use 2 criteria; (3) DARTNet provides access to data for research activities that are funded by direct research dollars, provided at prices that generate excess revenue; and (4) DARTNet provides access to large primary care datasets for observational studies and pregrant analyses such as for sample size development. The ability of the system to support pragmatic trials will be described.
Conclusion: The DARTNet model facilitates the use of direct grant dollars to generate revenue to support the overall enterprise through a purchased services arrangement. Other services provided through subcontracting provide facilities and administration fees as well as direct dollars to support the system. The flexibility of the business model overcomes the complicated financial arrangements and governance requirements of many professional associations and academic medical centers.
Keywords: Sustainability; research networks; shared resources.