Electronic Health Records
The Electronic Health Records (EHR) Core is creating the NIH Collaboratory Distributed Research Network (DRN), a potent new resource that enables investigators to collaborate in the use of clinical data, while also safeguarding protected health information and proprietary data. It supports both single- and multi-site research programs.
The Network’s querying capabilities reduce the need to share confidential or proprietary data by enabling authorized researchers to send queries to collaborators. In some cases, queries can take the form of computer programs that a data partner can execute on a pre-existing dataset. The data partner can return the query result, rather than the data itself. This form of remote querying reduces legal, regulatory, privacy, proprietary, and technical barriers associated with data sharing for research.
The NIH and its investigators might pose queries related to:
Assessing disease burden and outcomes.
Estimate the frequency of conditions or patterns of care. For example, determine frequency and duration of insulin pump use, and characterize the individuals who use them.
Pragmatic clinical trial design.
Assess baseline rate of events of interest.
Identify organizations with enough potential study participants.
Identify potential study participants – all identifiable information stays with the host organization.
Pragmatic clinical trial follow up.
Clinical organizations can periodically scan their electronic data covering study participants to outcomes of interest, such as:
Dispensing of prescription medications, including dates, names, and amounts dispensed.
All inpatient and ambulatory medical encounters, with dates and diagnoses and procedures.
Reuse of research data.
An investigator who has created a clinically rich research dataset can use the Network to authorize a different investigator at another organization to submit analytic programs. Depending on the analysis, the output need not contain direct identifiers.
Private network for a multi-center study
The Collaboratory Coordinating Center can establish a private distributed network to distribute programs that create separate analysis files at each site and to securely transfer the analysis files to the analyst.
The project’s approach is supported by the Office of the National Coordinator for Health Information Technology’s Standards & Interoperability Framework Query Health Initiative and has been adopted by several multi-site research collaborations, including the FDA Mini-Sentinel (http://www.minisentinel.org).
This product will enable NIH investigators and related health systems to exchange information using methods and architecture currently functional in the FDA Mini Sentinel project. By facilitating knowledge exchange without requiring massive data warehousing effort, the system will combine local control and security with the power that can be achieved from huge data sets.
The NIH Collaboratory DRN is not an actual network, but provides a mechanism to support networks focused on particular diseases, therapies, or service delivery issues. The NIH Collaboratory DRN is designed to be an especially powerful vehicle for supporting research oriented towards multiple comorbidities.
EHR Core Products
Collaboratory Core and Working Group Members