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 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 OneFlorida Clinical Research Consortium’s participation in PCORnet from 2015 to 2019. This report outlines OneFlorida’s achievements in building its research infrastructure capacity to create ways to

  1. 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

OneFlorida Clinical Research Consortium brought together academic, government, and health systems across the state to collect data to address the area’s biggest health challenges. Led by the University of Florida, the network included 11 additional partners: AdventHealth; the Agency for Health Care Administration; Bond Community Health Center, Inc; Capital Health Plan; Florida State University; Health Choice Network; Nicklaus Children’s Hospital; Orlando Health; Tallahassee Memorial HealthCare; University of Florida Health; and University of Miami.

Title OneFlorida Clinical Research Consortium
Network design Clinical Data Research Network (CDRN)
Lead partner University of Florida
Other partners AdventHealth
Agency for Health Care Administration
Bond Community Health Center, Inc.
Capital Health Plan
Florida State University
Health Choice Network
Nicklaus Children’s Hospital
Orlando Health
Tallahassee Memorial HealthCare
University of Florida Health
University of Miami
Participants 1,240 healthcare practices and clinics and 22 hospitals
Population 5,290,021 Florida residents

How does the network operate?

OneFlorida created a committee to manage network activities such as putting policies and procedures into place and approving and monitoring research studies. As the lead, the University of Florida ran the committee and had two voting members. Each partner organization had one voting member on the committee. Partner organizations led other network programs such as groups that focused on certain health conditions like heart disease, obesity, rare diseases, children’s health, and behavioral health.

All partners signed three agreements when they joined the network. The first agreement outlined the network’s expectations around how the partners should work together. The second explained how organizations should handle electronic patient data. The third allowed OneFlorida’s Institutional Review Board, or IRB, to oversee all network studies. An IRB is a group that makes sure studies are ethical and protect participants.

Network partners store patient data securely. To answer research questions, the network provides data that cannot be used to identify patients and follows strict security rules. The network carried out several data quality checks, including making sure that data follow CDM rules.

How did the network involve patients and other partners?

The network created a citizen scientist program to train community members on ways to participate in the healthcare system and research. Eight community members with diverse backgrounds served as citizen scientists who were paid by the University of Florida to provide feedback on network research studies at regular meetings. Researchers could also request that a citizen scientist join a study to offer their viewpoint. Citizen scientists participated in groups and committees throughout the network. One citizen scientist helped lead and served as a voting member of the committee that managed network activities. OneFlorida also surveyed and interviewed other patients in the community to get feedback on network activities.

Some doctors, known as clinical champions, worked together with other doctors to improve studies. Clinical champions received a small payment every year. Some got additional funds when they did a lot of work on a particular study.

Who is in the network?

As of 2019, OneFlorida’s database contains information on more than 5 million Florida residents. Data are available since 2012. Data come from patients who agreed to release their health information as well as electronic health records from partner organizations, Medicaid and Medicare claims, the Florida Cancer registry, and state vital statistics.

Population (as of 03/29/19)

Race/ethnicity

  • 45% white
  • 23% black
  • 29% Hispanic

Sex

  • 57% female
  • 43% male

Age

  • 49% 20 years or younger
  • 23% 21–44 years 
  • 16% 45–64 years
  • 7% 65–74 years
  • 6% 75+ years

How is the network supporting research?

While a Partner Network in PCORnet, OneFlorida participated in 31 studies. OneFlorida co-led several PCORnet research groups that worked together to conduct studies. OneFlorida also combined its data set with another CDRN to create one of the largest databases on child health in the United States.

How does the network support future research?

OneFlorida follows PCORI standards to make sure its 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.

Journal Citations

Related Journal Citations

Project Information

Elizabeth Ann Shenkman, PhD
University of Florida
$7,825,527 *

Key Dates

March 2019
2015
2019

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