At the center of the National Patient-Centered Clinical Research Network (PCORnet), PCORI’s most ambitious initiative to date, lies the PCORnet Coordinating Center, a hard-working engine that combines three prominent research organizations, Duke Clinical Research Institute, Genetic Alliance, and Harvard Pilgrim Health Care Institute, to effectively manage the entire Network’s data and engagement activities. The Coordinating Center takes on everything from coordinating PCORnet’s operational activities to supporting and collaborating with PCORnet’s vast Partner Networks, comprised of Clinical Data Research Networks (CDRNs) and Patient-Powered Research Networks (PPRNs), to help them pursue PCORnet’s goal of moving toward a continuous learning healthcare system. But how do they do it?
In this blog, we take a closer look at one component of the Coordinating Center, the PCORnet Distributed Research Network Operations Center (DRN OC). The DRN OC performs many activities to strengthen PCORnet’s data infrastructure, but today we will focus on its efforts to harmonize data across our Network.
“The tremendous effort undertaken on a quarterly basis by PCORnet’s DRN OC and PCORnet’s data contributing sites is an excellent example of the collaborative nature of this Network.” said Darcy Louzao, operation lead of the DRN OC. “It is a process that continues to strengthen PCORnet’s data for the conduct of more efficient, high quality research studies.”
To fully understand how the process works, let’s start with some background. PCORnet is a distributed research network, which means that the data it leverages is not centralized in one location; rather, it allows each institution to remain in control of its data to safeguard patient privacy. Data—such as date of birth, blood pressure, or diagnoses—are harmonized across multiple locations so that when a researcher asks a question, such as “How many patients have high blood pressure?” CDRNs can all answer the question in the same way. Maintaining a distributed research network requires substantial and ongoing effort. One healthcare system in the Midwest might chart a patient’s high blood pressure in an entirely different way than another system in the Northeast, which would lead to inaccurate research results without harmonization. What seems like an easy question can quickly become complicated. So how can you ask a research question to hundreds of institutions and get back meaningful, trustworthy results to improve clinical decision-making?
The answer starts with PCORnet’s more than 80 data contributing sites, which act as the data sources for PCORnet’s CDRNs. These data contributing sites standardize their data to the Common Data Model (CDM) so that it all maps to the same consistent format. By undertaking this step, the DRN OC creates a platform that enables much more rapid responses to research questions. In order to maximize the value and quality of PCORnet’s data to researchers, the DRN OC then collaborates with each data contributing site to curate the data via quarterly reports that offer a comprehensive look at trends and ensure each data contributing site is correctly standardizing their data to the CDM.
The program we use to curate our data generates nearly 10,000 output tables every quarter. These tables consist of raw data that document patient encounters (such as electronic health records, claims, and administrative data) from each data contributing site. A program developed by the DRN OC then converts the information populating these tables into unique reports for each network that include summary tables and trend charts. This report is useful for both the data contributing site and the DRN OC to review to identify opportunities for continual quality improvements. For example, a trend chart from this report that illustrates data longitudinally and can easily identify outliers, which may indicate an error in how data were standardized to the CDM. Thus, in addition to ensuring PCORnet researchers have access to quality data, the DRN OC is helping our data contributing sites better understand and learn from their own data.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.