PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.
Clinical Data Research Networks (CDRNs) are one type of network supported by PCORI. CDRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CDRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.
PCORI funded the Greater Plains Collaborative’s (GPC) participation in PCORnet from 2015 to 2019. This report outlines GPC’s achievements in building its research infrastructure capacity to
- Create ways to involve patients, healthcare providers, health plans, and health systems in the research process and decision making about the network
- Continue building the PCORnet CDM to add new types of data, ensure data quality, answer questions and requests, link to data outside the network, and keep data secure and private
- Create an efficient infrastructure to carry out clinical trials
- Create rules and guidance to protect people who take part in research studies, keep participants’ information confidential, and examine the risks of proposed studies
- Work with PCORnet partners and partners outside the network to do research studies, build information systems, and share knowledge and practices
- Create a plan to fund the network after PCORI funding ends
Network at a glance
The GPC collected data for more than 20 million patients. Led by the University of Kansas Medical Center Research Institute, the network included 11 additional partners in nine states. GPC research focused on three topics: amyotrophic lateral sclerosis (ALS), breast cancer, and obesity. ALS is a progressive, fatal nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
|Greater Plains Collaborative
|Clinical Data Research Network (CDRN)
|University of Kansas Medical Center Research Institute
|Children’s Mercy Hospital
Indiana University – Regenstrief Institute
The Medical College of Wisconsin
University of Iowa Health Care
University of Minnesota Medical Center
University of Missouri Health Care
University of Nebraska Medical Center
University of Texas Health Science Center at San Antonio
University of Texas Southwestern Medical Center
The University of Wisconsin–Madison
|Area(s) of focus
|ALS, breast cancer, and obesity
How does the network operate?
The GPC established guidelines across its 12 partners to represent the interests of patients, clinicians, health systems, and researchers. GPC councils used these guidelines when making decisions about taking part in research projects. These councils represented patients, health systems, and researchers.
The GPC streamlined research processes by developing agreements across organizations for sharing data and protecting the ethical rights and privacy of the people participating in research. The network also developed 14 standard processes for how research teams should conduct research using GPC data.
The GPC developed a system to share and compare data. All GPC partners linked their hospital tumor registries with the CDM to support cancer research. A CDM establishes a standard way of defining and formatting data. Network partners stored patient data securely. To answer research questions, the network provided data that could not be used to identify patients and followed strict security rules.
How did the network involve patients and other partners?
The GPC developed guidelines so that researchers would know how to involve patients and partners in GPC research projects. Members from a patient advisory council reviewed research proposals and were involved in all research projects. Each of the 12 partners had a patient advisor and patient engagement officer who were part of the patient advisory council.
The GPC developed a buddy system to match new patient advisors and patient engagement officers with established members to help them learn about their roles. In addition, the network provided each partner with position descriptions of these roles for each site to use when recruiting patients to get involved.
Who is in the network?
The GPC database had data for 20,119,151 patients as of June 27, 2019. These data came primarily from electronic health record and billing systems but also from insurance claims and a registry that stored data about patients with tumors. Most GPC sites contributed data starting in 2010; however, some sites had data available prior to that. The GPC also used Medicare and Medicaid claims data to increase data completeness.
|Population* (as of 06/27/19)
- 79% white
- 8% black
- 13% other
- 70% non-Hispanic
- 11% Hispanic
- 19% other
- 26% 20 years or younger
- 29% 21–44 years
- 26% 45–64 years
- 11% 65–74 years
- 8% 75 years or older
*Reflects a subset of total network data.
How is the network supporting research?
GPC participated in 20 research studies. The GPC also partnered with Patient-Powered Research Networks (PPRNs) and other research institutions on other PCORnet-related studies. PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.
How does the network support future research?
CDRNs follow PCORI standards to make sure their networks continue after PCORI’s funding ends. CDRNs format their data to the CDM and involve patients and healthcare providers in planning and carrying out research studies.
Clinical Data Research Networks (CDRN): CDRNs are networks that originate in healthcare systems, such as hospitals, health plans, or practice-based networks, and securely collect health information during the routine course of patient care.
Common Data Model (CDM): A CDM establishes a standard way of defining and formatting data.
Institutional Review Board (IRB): A group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.
PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.