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.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including IBD Partners, participated as Partner Networks in PCORnet.

PCORI funded IBD Partners’ participation in PCORnet from 2015 to 2019. This report outlines IBD Partners’ achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, families, and caregivers in decision making about the network
  2. Create a way to collect and share data reported by patients for research
  3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
  4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

IBD Partners was created to focus on patients with Crohn’s disease and ulcerative colitis. These two health problems are also called inflammatory bowel disease, or IBD. Patients with IBD have chronic inflammation of their gastrointestinal tract. The PPRN is a virtual network led by the University of North Carolina at Chapel Hill. The network consists of patient members from across the United States.

TitleIBD Partners: A Participant-Powered Research Network of Patients with Crohn’s Disease and Ulcerative Colitis
Network designPatient-Powered Research Network (PPRN)
Lead partnerThe University of North Carolina at Chapel Hill
Participants18,318
Area(s) of focusAdults with Crohn’s disease or ulcerative colitis

How does the network operate?

IBD Partners collected data from patient members through online surveys and a patient portal. Surveys collect data on patients’

  • Personal characteristics
  • Disease characteristics
  • Health behaviors
  • Symptoms and quality of life related to IBD

Using health apps and devices, the network also collected data on fitness, nutrition, sleep habits, and weight.

IBD Partners created ways to make it easier for the PPRN to manage small and low-risk studies.

How did the network involve patients and other partners?

IBD Partners established a Patient Governance Committee that included six patients who

  • Helped develop the network’s mission
  • Helped the research focus on what matters to patients with IBD
  • Reviewed proposed studies
  • Created policies related to informed consent and privacy protections
  • Enhanced communication among patients in the network
  • Reviewed input from patients in the network

The Patient Governance Committee met monthly.

IBD Partners also created a Project Selection Committee. The committee included researchers, doctors, foundation representatives such as individuals from the Crohn’s and Colitis Foundation, and patients. Twice a year, the committee reviewed research proposals that request use of network data.

IBD Partners required all projects to include a patient on the research team. Research teams could either find their own patient or include a patient from the Patient Governance Committee. Patients worked with the research team to create a plan for getting the word out about the results for each study.

Patient members of IBD Partners used the network’s patient portal to suggest, vote on, and discuss research ideas.

Who is in the network?

As of March 2019, 18,318 patients were part of IBD Partners.

Population (as of 03/22/19)

Race/ethnicity

  • 81% white
  • 2% black
  • 2% mixed race
  • 1% Asian
  • 1% other
  • 12% no information
  • 3% Hispanic or Latino

Age

  • 43% 18–44
  • 36% 45–64
  • 16% 65 or older
  • 6% no information

Sex assignment at birth

  • 67% female
  • 27% male
  • 6% no information

While a Partner Network in PCORnet, IBD Partners participated in 52 research studies.

How does the network support future research?

Other networks can use the data collection and management tools that IBD Partners created.

IBD Partners has funding from the Crohn’s and Colitis Foundation to continue its work through the end of 2019. The foundation will also maintain survey systems through the end of all currently funded PCORnet projects.

Glossary

Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

View Phase I Award

Journal Citations

Related Journal Citations

Project Information

Michael Kappelman, MD, MPH^
The University of North Carolina at Chapel Hill
$1,638,552
The CCFA Partners Patient Powered Research Network

Key Dates

March 2019
2015
2019

Study Registration Information

^The Principal Investigator for Phase I of this project was R. Balfour Sartor, MD, at the Crohn's and Colitis Foundation of America, Inc.

Tags

Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 10, 2024