NIH Collaboratory Distributed Research Network

NIH Collaboratory Distributed Research Network

Millions of people. Strong collaborations. Privacy first.

The NIH Collaboratory Distributed Research Network (DRN) enables investigators to collaborate with each other in the use of electronic health data, while also safeguarding protected health information and proprietary data. It supports both single- and multisite 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 holding data (i.e., data partners). 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, typically aggregated (count) data, 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 network seeks to build strong and trusted collaborations to support the research that will lead to improved health for millions of people around the world.

Presentations

Dr. Jeffrey Brown describes how the NIH Collaboratory’s DRN facilitates multisite research partnerships.


Drs. Jeffrey Brown and Lesley Curtis explain the NIH Collaboratory Distributed Research Network.

What does the NIH Collaboratory Distributed Research Network do?

  • Provides infrastructure and mechanisms to facilitate multicenter studies using electronic clinical, administrative, and research data

  • Allows searchable discovery of available data resources, health systems, researchers, and re-usable analytic tools

  • Enables authorized investigators to identify clinical, administrative, and research datasets of interest

  • Facilitates multisite distributed querying of data resources, while allowing the data to remain in the control of the data owners

  • Serves as a repository of tools to leverage electronic health records to support clinical research across multiple health systems

How does the network operate?

Organizations that hold clinical or research datasets (data partners) can list detailed information about their health system, data sources, and preferences for collaboration.|

The network enables investigators who wish to collaborate to identify and contact potential research partners among the organizations that hold relevant datasets. If they agree to collaborate, then the organizations holding data can allow secure distributed querying of their research datasets by individuals whom they authorize on a case-by-case basis. This distributed querying is accomplished by "sending the question to the data." Results that are returned are often aggregate results, without confidential or proprietary data. The level of data sharing is determined in advance as part of the collaboration agreement.

 The NIH Collaboratory DRN Coordinating Center (CC) will facilitate identification of topic-appropriate data resources available within the network, aid in developing requests, and support feasible queries and implementation of approved research protocols. The NIH Collaboratory DRN operates under an “opt in” model. That is, no participating data partners are expected to participate in research activities without explicit prior approval and involvement of a data partner investigator. Data partners can also be requestors and can collaborate with other data partners/requestors on specific projects.

Network features

  • Data partners are able to maintain possession of, and analyze, their own data

  • Data partners are able to provide results, not data, to their external collaborators

  • Data partners have complete control over the individuals or organizations with whom they collaborate

  • ALL queries are opt in—data partners can choose whether to accept a query and whether to execute it

  • All activities are audited and secure

  • The network supports both menu-driven querying and execution of custom analytic code

  • The network supports both manual and fully automated execution of queries

  • Data holders have full capability to use the network’s querying tools to query their own data

Who can submit a query/data request?

Authorized requestors include NIH Collaboratory leadership, the data partners, and other individuals/organizations designated by NIH Collaboratory leadership. Requestors do not have to be experts in observational research or use of healthcare data to initiate a request. The NIH Collaboratory DRN CC helps requestors understand and use the network, assesses fit between requests and DRN capabilities, and suggests ways to maximize the usefulness of DRN data and resources. All requestors must adhere to the responsibilities and expectations outlined below.

Requestors are responsible for:

  • Completing request forms

  • Clearly describing the nature of the request and the intended use of the findings, including grant or other funding applications

  • Responding to requests for clarification from the NIH Collaboratory DRN CC and the Electronic Health Records Core

  • Obtaining necessary approvals by IRBs and HIPAA privacy boards

  • Working with NIH Collaboratory DRN CC and Data Partners to execute necessary agreements/contracts

Requestors are expected to:

  • Use results provided only for the stated and approved purpose. This may include a requirement to keep results confidential.

  • Abide by any other limitations on use, issued by the Electronic Health Records Core, the NIH Collaboratory DRN CC, and/or the data partner providing and reporting data

How do I submit a query/data request?

The submission period is now closed. Please check back for future opportunities.

Detailed information, including examples of requests, can be found in the DRN User’s Guide.

What datasets are available in the NIH Collaboratory Distributed Research Network?

Participating organizations, investigators, and existing research networks provide information about their data resources that they are willing to make available for collaboration, as well as information about their requirements for collaboration. The listing includes information about the type of data, its format, expectations for scientific involvement by the data holder, and other information.

Listing the availability of a dataset does not imply that the data will be made available for a particular use.

Information about data for the following data partners is currently accessible via the NIH Collaboratory DRN. For more information please contact: support@popmednet.org

How can my organization/network become a data partner?

If you are interested in becoming a data partner, please contact the NIH Collaboratory DRN CC. There are no restrictions on the type of data or its format, including

  • Clinical data warehouses

  • Registry data

  • Analysis files

All data models are acceptable, including the Mini-Sentinel and OMOP Common Data Models, the HMO Research Network's Virtual Data Warehouse, and i2b2.

What software platform does the network use?

The NIH Collaboratory DRN uses PopMedNet open source software that facilitates the creation, operation, and governance of distributed health data networks, and enables distributed analyses of electronic health data to support medical product safety, comparative effectiveness, quality, medical resource use, cost-effectiveness, and related studies. PopMedNet is used by several multisite initiatives funded by agencies such as the FDA, AHRQ, and NIH. The software adheres to the standards for distributed querying promulgated by the ONC Query Health Initiative.

Some projects that use PopMedNet:

What are the confidentiality and nondisclosure rules for data partners and DRN Coordinating Center staff?

Rules related to the confidentiality of information disclosed in the course of data or other requests prohibit a data partner or Coordinating Center staff member from, among other actions:

  • Sharing requests, request forms, or related materials with anyone who has not been designated by the DRN Coordinating Center to participate in the distributed request process

  • Granting anyone who has not been designated by the DRN Coordinating Center to participate in the distributed request process access to the Collaboratory DRN portal using his or her password or credentials, or through shared communication

  • Using information contained in a distributed request or request form for his or her personal benefit or making such information available for the personal benefit of any other individual or organization

Violation of these policies will result in removal as a partner in the NIH Collaboratory or other sanction as determined by the NIH Collaboratory’s Steering Committee.

Presentations

3/11/2016: Grand Rounds Presentation: Uses of the NIH Collaboratory Distributed Research Network (Video; Slides)

6/5/2015: Grand Rounds Presentation: NIH Collaboratory Distributed Research Network (Video; Slides)

11/14/2014: Grand Rounds Presentation: Using the NIH Collaboratory's and PCORnet's Distributed Data Networks for Clinical Trials and Observational Research: A Preview (Video; Slides)

8/19/2014: Electronic Health Records Core Presentation at Steering Committee Meeting

6/13/2014: Grand Rounds Presentation: The NIH Collaboratory Distributed Research Network: A Privacy Protecting Method for Sharing Research Data Sets (Video; Slides)

Citation:

NIH Collaboratory Distributed Research Network: NIH Collaboratory Distributed Research Network. In: Rethinking Clinical Trials: A Living Textbook of Pragmatic Clinical Trials. Bethesda, MD: NIH Health Care Systems Research Collaboratory. Available at: http://www.rethinkingclinicaltrials.org/nih-collaboratory-distributed-research-network-1/. Updated September 14, 2017.