Data Network Request

The Data Network Request provides data to determine the feasibility of using PCORnet for a potential study. Requests are typically pre-research or prep-to-research queries, submitted when a requestor plans to collaborate with PCORnet and its Distributed Research Network Operations Center (DRN OC) to obtain aggregated results for informing the development of a research project.

PCORnet is made up of multiple partner networks, and the DRN OC can currently query data from the 13 Clinical Data Research Networks (CDRN). Queries can be executed against data that have been standardized into the PCORnet Common Data Model (CDM) and for which there are existing tools that reference the desired tables.

The Submission and Review Process

Before submitting a request, it is important to familiarize yourself with the PCORnet CDM, data summaries, and current tools to ensure that the question posed can be answered. The first step of the official process is to complete the PCORnet Front Door Request Form, including the Data Network Request section.

Image detailing the PCORnet Data Network Request process. Initial Assessment (approximately 3 weeks): Requestor, Front Door, DRN OC, Requestor. Query Specifications (approximately 3-6 weeks): DRN OC, Requestor. Query Distribution, Report (approximately 6 weeks): DRN OC, Partner Networks, DRN OC, Requestor.
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Following an administrative review by the Front Door, your request will be reviewed by the DRN OC for feasibility.  The DRN OC will prepare an initial assessment and plan for Requestor review.  Once the Requestor agrees to the plan, query specifications will be formalized and provided to the Requestor for approval. Following this approval, the query will be developed and distributed to the partner networks, the results consolidated, and a final report provided back to the Requestor. It is common for follow-up emails or phone calls during the process to answer questions from the DRN OC, discuss alternative ways to frame a research question based on the available data, and review the query specifications and final report. Updates regarding turnaround time will be provided throughout the process. Use the downloadable Request Form Template to preview the Front Door request questions and compile your information ahead of time.

Learning Resources: PCORnet Common Data Model and Analytic Tools

The PCORnet CDM allows for data from heterogeneous sources to be standardized into a common format, which enables the use of distributed query tools. Through data curation, the DRN OC works with partner networks to: a) ensure that data are formatted according to the CDM specifications, b) describe the missingness of tables and fields, and c) continually increase the quality of the data populating the model.

The DRN OC queries the partner networks using tools such as Menu-Driven Queries (MDQ) and SAS analytic tools. Each type of tool is capable of querying certain tables. Tools are currently in development to rapidly query data from the prescribing and dispensing tables. The labs table needs to be examined on a case-by-case basis.

Module 1: The PCORnet Common Data Model (CDM)

This module explains the utility of a Common Data Model (CDM) and provides a high-level overview of the CDM used in PCORnet.

Module 2: Learnings from PCORnet Data Curation

This module describes each of the tables within the PCORnet CDM in more detail, highlighting the key fields of each table and current data population.

Module 3: Querying in PCORnet

This module explains how querying works within a Distributed Research Network and the types of tools available for querying in PCORnet; namely Menu-Driven Query (MDQ) and PCORnet Modular Program 1 (PMP1).


Image of MDQ Sample Application

Image of PMP1 Sample Application                

                                                              Click Images to Enlarge

Computable Phenotype Resources

A computable phenotype refers to a clinical condition or characteristic that can be ascertained via a computerized query to an electronic health record (EHR) system or clinical data repository using a defined set of data elements and logical expressions. Provided below are a few resources on searching for and documenting a computable phenotype.

Example of a Data Network Request

A researcher is interested in submitting a proposal for a clinical trial that will examine outcomes of a specific intervention on primary and secondary outcomes. The proposal will plan for patients to be recruited from, and outcomes ascertained using, PCORnet. But first, the researcher would like to assess the potential study population available at sites within PCORnet to: a) provide preliminary data for the application, b) conduct power calculations, and c) identify target-rich sites to see if they would be interested in participating in the project, if funded. Therefore, the researcher submits a data network request to obtain counts of patients that meet their inclusion/exclusion criteria that are available in the PCORnet CDM.

Sample Inclusion and Exclusion Criteria

  Inclusion Criteria   Exclusion Criteria
  Age 18 or older   Currently pregnant
  Ability to read and speak English   Life expectancy <6 months
  Diagnosis of COPD
  Have not had a lung volume reduction operation

Based on these criteria, a query to assess the counts of patients at partner networks who are: a) over 18, b) have been diagnosed with COPD, and c) do not have a history of a lung volume reduction operation would be constructed. These counts could be provided at the PCORnet-level or, as needed, broken down by partner network.

If the study was funded, a similar query could be used to identify a potential pool of patients for recruitment, however certain variables such as life expectancy < 6 months, currently pregnant, or a lung volume reduction operation since the last update of the data would still need to be confirmed with the partner networks.

Data Network Request FAQs

Will my query utilize data from the Patient-Powered Research Networks (PPRNs)?

No, the PPRNs are not able to be queried via the PCORnet Query Tool at this time.

What kinds of data questions can I ask through the Front Door?

Pre-research questions that utilize data in the PCORnet CDM for the purpose of informing a research study. See Learning Module 1: The PCORnet Common Data Model for additional information.

How does PCORnet ensure research ethics and confidentiality?

PCORnet’s Distributed Research Network uses multiple layered techniques to maximize the security and privacy of personal information. Queries within PCORnet are run by partner networks against local instances of the PCORnet CDM.  These data remain local and remain secure behind the firewalls of each partner. In addition, the results of PCORnet queries are in the form of aggregate counts or summary statistics, making them de-identified.

PCORnet’s governance structure provides oversight to ensure that the Network’s resources are used efficiently and appropriately. There is a multi-stakeholder Executive Committee that oversees the operations of the PCORnet, as well as Data, Research, and Engagement Committees that address cross-network issues such as research ethics, privacy, patient involvement, and clinical trial designs and methods.

Last updated on March 6, 2018