• Download 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 the Community and Patient Partnered Research Network (CPPRN), participated as Partner Networks in PCORnet.

PCORI funded the CPPRN’s participation in PCORnet from 2015 to 2019. This report outlines the CPPRN’s 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

The University of California, Los Angeles led the CPPRN. The network was made up of Louisiana State University and 11 other medical centers, universities, government agencies, and community-based organizations. The network aimed to improve mental and behavioral health for African Americans, Hispanics, and other racial and ethnic minority groups. The network focused on adults and teenagers living in the Los Angeles, California, and New Orleans, Louisiana, areas. As of March 31, 2019, the network had data on 1,217 participants.

How does the network operate?

The CPPRN created an executive committee made up of the leaders from each partner organization. The committee supervised all CPPRN activities such as study recruitment. It also reviewed the data collected by the network. Prior to joining the executive committee, all partner organizations signed a legal document that outlined roles and responsibilities. Agencies involved with study recruitment signed letters showing support for the network.

People from the CPPRN spoke to community members about the network in person at network sites. Eligible community members who agreed to participate provided contact information and completed a survey about their backgrounds, well-being, service use, and demographic factors. The network also enrolled people through an online form on the Mental Health America website. The University of California, Los Angeles managed and stored the collected information in a secure database. The Los Angeles County Department of Health Services shared health records with the CPPRN. No health record contained information that could connect it to an individual. The network linked those records to data it had in its database.

How did the network involve patients and other partners?

To guide all network activities, the CPPRN followed a philosophy about how to work with communities. This approach focused on creating equal partnerships between researchers and community leaders. Each person could contribute to every part of the research process.

The CPPRN prioritized in-person recruitment to build trust between community members and the network. Patients, caregivers, and community members worked with the executive committee on developing a research agenda. The network held conferences in Los Angeles and New Orleans that focused on approaches to partnership, the goals of the CPPRN, progress in collecting data, and plans for new studies, including those developed during the award period.

Who is in the network?

As of March 31, 2019, the network had data on 1,217 participants. The network compiled data from surveys, screeners, and enrollment forms. The network also piloted ways to integrate data across health and social service organizations in Los Angeles County.

While a Partner Network in PCORnet, CPPRN participated in five studies.

How does the network support future research?

PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering engagement with racial and ethnic minority communities at all stages of the research process, participating in multi-network PCORnet research, and building external collaborations.

Glossary

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.

Overview

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 Community and Patient Partnered Research Network (CPPRN), participated as Partner Networks in PCORnet.

PCORI funded the CPPRN’s participation in PCORnet from 2015 to 2019. This report outlines the CPPRN’s achievements toward the PPRN goals of developing and optimizing research and engagement infrastructure capacity to

• Establish a governance structure that fully engages patients and other stakeholders for the purposes of contributing to research
• Create a data infrastructure conducive to the ongoing collection of patient-reported data
• Meaningfully engage patients, caregivers, families, and community members in the research process, including identifying and recruiting participants for clinical trials and other research studies
• Lead or partner in the conduct of comparative effectiveness studies responsive to the research priorities of their communities

Network Infrastructure

Led by the University of California, Los Angeles, the CPPRN is made up of Louisiana State University and 11 additional medical centers, academic institutions, government agencies, and community-based organizations. The network aims to improve mental and behavioral health outcomes for racial and ethnic minority adults and adolescents living in the Los Angeles, California, and New Orleans, Louisiana, areas. As of March 31, 2019, the network had 1,217 participants.

Network Governance and Operations

The CPPRN’s governance was rooted in community-partnered participatory research with academic/community co-leadership through two-way knowledge exchange. The CPPRN established an executive committee with representatives from each partner organization to provide oversight on all network activities such as study recruitment and reviewing data collected by the network. All partner organizations signed a memorandum of understanding prior to joining the executive committee. Agencies involved with study recruitment signed letters of commitment.

CPPRN representatives recruited community members in person at network sites. Eligible community members who agreed to participate provided contact information and completed a survey about behavioral health, social determinants, health service use, and demographics. The network supplemented one-on-one recruitment with online enrollment on the Mental Health America website. The University of California, Los Angeles created a secure database to manage and store information. The CPPRN established a data sharing agreement with the Los Angeles County Department of Health Services and obtained de-identified service records from multiple county health and social services organizations.

Stakeholder Engagement

The principles of community-partnered participatory research guided all network activities. This approach focuses on creating equal partnerships between researchers and community leaders where each person has input during all stages of the research process.

The CPPRN prioritized in-person recruitment to build trust between community members and the network. Patients, caregivers, and community members collaborated on the development of a research agenda with the executive committee, as well as through input during community engagement and dissemination conferences in Los Angeles and New Orleans. At conferences, the network reviewed and discussed approaches to partnership, the goals of the CPPRN, progress in collecting data, and plans for new studies, including those developed during the award period.

Demographics and Research Capacity

As of March 31, 2019, the network had 1,217 participants. The network compiled data from surveys, screeners, and enrollment forms. The network also piloted the integration of county service records across health and social services organizations in Los Angeles County.

As a Partner Network in PCORnet, the CPPRN participated in one observational study, one clinical trial, one randomized controlled trial, and two qualitative studies.

Future Opportunities

PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering engagement with racial and ethnic minority communities at all stages of the research process, participating in multi-network PCORnet research, and building external collaborations.