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 CENA, participated as Partner Networks in PCORnet.

PCORI funded CENA participation in PCORnet from 2015 to 2019. This report outlines CENA 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

CENA is a PPRN made up of patients from disease-specific advocacy groups. Each group represents patients with a specific health condition. CENA supported the groups by working with them in a network. More than 10,000 patients and caregivers from 16 groups were involved in CENA. The goal of CENA was to help the groups conduct studies that answer research questions of interest to people with those health conditions.

Title Community Engaged Network for All (CENA)
Network design Patient-Powered Research Network (PPRN)
Lead partner Genetic Alliance, Inc.
Other partners 16 disease advocacy organizations
Private Access
University of California San Francisco (UCSF)
University of California Davis (UCD)
Participants 10,153
Area(s) of focus Patients with
   Alström syndrome
   Asthma and allergies
   Celiac disease
   Dyskeratosis congenita
   Fibrolamellar hepatocellular carcinoma

How does the network operate?

People with lived experience of disease lead CENA. CENA created a board to govern the network. Each advocacy group named one patient to this board. These patients met throughout the project and discussed what information was important for the network to collect. The patients also gave input on topics like data collection and who can access data, as well as how CENA operates.

All of the advocacy groups used an online system, called Platform for Engaging Everyone Responsibly, or PEER, to build registries. These registries stored information patients chose to share about their health and the care they received. The PEER database collected data in PCORI’s standard format. It also allowed patients to control who could see and use their health data.

About half of the advocacy groups also collected and stored biological samples like blood or saliva from patients who agreed to share them. The groups collected these samples at their conferences or social events.

CENA used a web-based platform to communicate with patients, caregivers, clinicians, and researchers participating within the advocacy groups. Using the platform, the participants and researchers designed and conducted research studies and shared the results.

Researchers who wanted to use CENA data for studies requested permission through a standard process. CENA worked with Genetic Alliance’s Institutional Review Board, or IRB, to review all studies and ensure that they protected the rights and privacy of people who participated. Using one IRB to do all reviews helped make sure they were quick and low cost.

How did the network involve patients and other partners?

Through CENA, the advocacy groups connected patients and community members to research teams to serve as advisors on projects. Patients also gave input to guide research priorities. This input included talking about how important potential research topics are, how practical it is to do some studies, and how studies might affect a community. CENA helped guide researchers in how to pay patients who advise study teams, clearly define what patients will do on the teams, and make sure patients stay informed about study progress.

More than half of the advocacy groups involved patients in designing research projects. The groups connected their patients to research teams to design study methods, write information about studies, and create surveys and other ways of collecting information from patients.

Who is in the network?

As of March 31, 2019, CENA had 10,153 patients from the advocacy groups who gave consent for CENA to use their data.

Population (as of 03/31/19)

Race/ethnicity

  • 58% white
  • 2% Asian
  • 2% American Indian/Alaska Native
  • 1% black or African American
  • 2% other
  • 4% Hispanic or Latino

Age

  • 45% 18–44
  • 31% 45–64
  • 13% 17 years or younger
  • 9% 65+
  • 3% no information

Sex assignment at birth

  • 68% no information
  • 24% female
  • 8% male

Gender identity

  • 49% female
  • 13% male
  • 38% no information

While a Partner Network in PCORnet, CENA participated in 22 studies.

How does the network support future research?

PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations.

Glossary

Patient Registry: Patient registries store data about people with a specific health problem.

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.

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.

Engagement Resources

Project Information

Sharon Terry, MA
Genetic Alliance, Inc.
$1,923,338 *
Community Engaged Network for All

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