National Clinical Research Networks: Where Is the Nurse?

Amy L. Garcia; Ellen M. Harper; John M. Welton

Disclosures

Nurs Econ. 2019;37(2):100-102. 

In This Article

Abstract and Introduction

Abstract

The ability to link each nurse to each patient provides a new capability to investigate not only nursing care in general, but the contribution of each nurse providing care to each patient. Linking nurses to patients using identifying keys could open new lines of research.

Introduction

Nurses and the outcomes of nursing care are underrepresented in large clinical trials and national clinical research networks in the United States. Researchers struggle to share and compare data within and across clinical sites. Despite widespread use of electronic health records (EHRs), we are plagued by a lack of standardized data, interoperability, and willingness or ability to share data for research. Today, there are large research networks maintained by the National Institutes of Health, Agency for Healthcare Research and Quality, Veterans Health Administration, Food and Drug Administration (FDA), and, increasingly, by health systems. These emerging repositories show promise in identifying system-level performance that could lead to better overall clinical and operational outcomes in the future.

Some national networks use a distributed data model, as opposed to one centralized data warehouse. A distributed data network is a set of data warehouses with no central repository. The data can be shared and compared for research, by use of common data definitions and structures. Each organization maintains its own data security, privacy, and proprietary information. The National Patient-Centered Clinical Research Network (2019) has developed a system of distributed data networks (PCORnet®) to harness the power of data from EHRs while taking advantage of partnerships between patients, clinicians, and health systems (Kim, Mahajan, Miller, & Selby, 2017). The Observational Medical Outcomes Partnership (OMOP) is another data-sharing model developed by the FDA in a public-private partnership to bring out the value of health data through large-scale analytics (Observational Health Data Sciences and Informatics, 2019).

Within these data networks, providers of care are linked to the patient through provider billing data. Determining the nursing unit where care was provided, or which nurse provided the care, can be difficult as there is no consistent structure or definition for the location or non-billing provider. A group of nurses and data scientists at the Universities of Kansas and Colorado are working on a structure for the PCORnet and other distributed data networks to make the location of care and nurse characteristics visible to researchers.

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