Results Summary

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 health 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 patient-centered SCAlable National Network for Effectiveness Research’s (pSCANNER) participation in PCORnet from 2015 to 2019. This report outlines pSCANNER’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, healthcare providers, health plans, and health systems in the research process and decision making about the network
  2. 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
  3. Create an efficient infrastructure to carry out clinical trials
  4. Create rules and guidance to protect people who take part in research studies, keep participants’ information confidential, and examine the risks of proposed studies
  5. Work with PCORnet partners and partners outside the network to do research studies, build information systems, and share knowledge and practices
  6. Create a plan to fund the network after PCORI funding ends

Network at a glance

pSCANNER collected electronic medical record data for more than 30 million patients. Led by the University of California, San Diego, the network included health systems and Veterans Health Administration (VA) medical centers. pSCANNER focused on congestive heart failure, Kawasaki disease, and weight management and obesity. The goal of pSCANNER was to make healthcare data more accessible and usable for research so doctors and patients can make more informed health decisions.

Title patient-centered SCAlable National Network for Effectiveness Research (pSCANNER)
Network design Clinical Data Research Network (CDRN)
Lead partners University of California, San Diego
Other partners University of California, Davis
University of California, Irvine
University of California, Los Angeles
University of California San Francisco
San Mateo Medical Center
Cedars-Sinai Medical Center
University of Southern California (with Los Angeles County Department of Health Sciences, AltaMed Health Services Corporation, The Children’s Clinic of Long Beach, QueensCare Health Centers)
VA Medical Centers
University of Washington
University of Colorado
University of Texas Health Science Center
Population >30 million patients
Area(s) of focus Heart failure, Kawasaki disease, weight management and obesity

How does the network operate?

pSCANNER established an executive committee to manage the network and approve requests for research collaborations. Working groups carried out the day-to-day work of pSCANNER. These groups collaborated with other CDRNs; developed research tools; created strategies to involve patients, patient advocates, and doctors in the network; and streamlined policies and procedures.

The network designed its data to follow PCORnet’s CDM to ensure that pSCANNER could share data easily with other PCORnet Partner Networks and researchers. pSCANNER created a streamlined process to approve requests from other researchers to work with the network. In addition, all pSCANNER partners used processes that ensured studies were ethical and protected participants’ medical information. Network data were stored securely. To answer research questions, the network provided data only with appropriate approvals and under strict security rules.

How did the network involve patients and other partners?

pSCANNER included a patient representative as a voting member of the executive committee. Patients, patient advocates, healthcare providers, researchers, and health system managers served on working groups and the stakeholder advisory board.

Who is in the network?

As of April 30, 2019, pSCANNER had collected electronic medical record data for more than 30 million patients. These data include information from a wide variety of patients, including veterans and people from low-income neighborhoods.

Population (as of 04/30/19)

Race/ethnicity

  • 38% white
  • 9% non-white
  • 53% missing/other
  • 7% Hispanic

Sex

  • 68% male
  • 30% female

Age

  • 5% ≤18 years
  • 1% 19–21 years
  • 20% 22–44 years
  • 26% 45–64 years
  • 19% 65–74 years
  • 20% 75–89 years
  • 7% 89+ years
  • 3% unknown

How is the network supporting research?

While a Partner Network in PCORnet, pSCANNER participated in seven research studies.

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. CDRNs also take part in research with other networks in PCORnet and build relationships outside of PCORnet.

Glossary

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.

Project Information

Lucila Ohno-Machado, MD, MBA, PhD
University of California, San Diego
$9,557,618 *

Key Dates

April 2019
2015

Study Registration Information

Journal Articles 

Tags

Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 27, 2023