Research Action for Health Network (REACHnet)

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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 Research Action for Health Network’s (REACHnet) participation in PCORnet from 2015 to 2018. This report outlines REACHnet’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

Led by the Louisiana Public Health Institute (LPHI), REACHnet is a CDRN that represented almost 6.4 million patients at four healthcare systems in Louisiana and Texas. Ochsner Health System, Tulane Medical Center, University Medical Center New Orleans, and Baylor Scott & White Health contributed patient-level data from hospitals and clinics.

How does the network operate?

LPHI hosted the REACHnet Coordinating Center, which manages network activities such as researchers’ requests to conduct studies. The Coordinating Center worked with the REACHnet Steering Committee, a group with one representative from each partnering organization that makes decisions about the network. REACHnet patient partners gave input at Steering Committee meetings on how best to govern the network and carry out research activities.

REACHnet’s research participation policy and master data sharing and use agreement guided how the network operated. The policy outlined procedures for making decisions about research partnerships. The data use agreement described how other research partners may access data from REACHnet. These data cannot be used to identify individual patients. Network partners store patient data securely. The network follows strict security rules when providing data to research studies.

How did the network involve patients and other partners?

REACHnet worked with patients, clinicians, and other stakeholders to inform research projects and opportunities to work with the community. REACHnet held stakeholder advisory group meetings to get input on research priorities and activities. Patient partners co-led several community-facing activities such as social media outreach. Using a curriculum they created, patient partners trained community members to become engaged in the research process. REACHnet created a large patient network called Health in Our Hands, or HiOH. HiOH’s members agreed to be contacted about health research, including study results and opportunities to enroll in studies or collaborate with researchers as patient partners. Community members may join HiOH online or be recruited by HiOH ambassadors in community or healthcare settings.

Who is in the network?

REACHnet’s data center contains data for nearly 6.4 million patients at four health systems in Texas and Louisiana. Data are available since 2010.

How is the network supporting research?

While a Partner Network in PCORnet, REACHnet participated in more than 17 different studies and provided data to 13 other studies. The network offered study-related services, such as storing data, for other researchers. REACHnet collaborated with public and private insurers to connect patient data across different systems while protecting patients’ identities.

How does the network support future research?

To support ongoing research, REACHnet worked to

• Expand patient engagement through HiOH
• Test new and practical approaches to recruit patients into research studies
• Improve ways to link patient data across different systems while protecting individuals’ identities
• Collaborate across PCORnet and with external partners
• Develop a business model to provide research groups with opportunities to collaborate with network partners and make use of REACHnet’s products and services

REACHnet plans to continue collaborating with other PCORI-funded groups to expand the network’s research portfolio. REACHnet also joined a research network funded by the National Institutes of Health to conduct studies with partners nationwide. Finally, REACHnet is a co-leader of the PCORnet Surveillance Program, which aims to build and demonstrate capacity for disease surveillance using the national clinical data infrastructure.

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.

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.

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 Research Action for Health Network’s (REACHnet) participation in PCORnet from 2015 to 2018. This report outlines REACHnet’s achievements in developing and optimizing research infrastructure capacity to

1. Create mechanisms to engage patients, practicing clinicians, health plans, and health systems meaningfully in network governance and the research process
2. Continue building the PCORnet CDM to support new data elements, maintain high quality data sets, respond to queries, link to external data sources, and ensure patient privacy and data security
3. Establish an efficient infrastructure for conducting clinical trials
4. Develop research oversight infrastructure that protects research subjects, preserves participants’ confidentiality, and evaluates the risks of proposed studies
5. Collaborate with PCORnet and external partners to conduct research studies, build infrastructure, and share knowledge and practices
6. Develop a plan for financial sustainability beyond the PCORI infrastructure-funding period

Network Infrastructure

Led by the Louisiana Public Health Institute (LPHI), REACHnet is a CDRN that represented almost 6.4 million patients at four healthcare systems in Louisiana and Texas. Ochsner Health System, Tulane Medical Center, University Medical Center New Orleans, and Baylor Scott & White Health contributed patient-level data from hospital and ambulatory care sites.

Network Governance and Operations

LPHI hosted the REACHnet Coordinating Center (CC), which managed network operations. A network navigator within the CC managed researchers’ requests to conduct studies in collaboration with REACHnet. The CC worked with the REACHnet Steering Committee, a group comprising one representative from each partnering organization and responsible for network governance and research participation decisions. REACHnet patient partners attend steering committee meetings and provide input on how best to govern the network and carry out research activities.

REACHnet’s research participation policy and master data sharing and use agreement guided network governance. The policy outlined procedures for decision making about research collaboration opportunities. The data use agreement described how internal and external research partners may access data through the REACHnet infrastructure and streamlined the regulatory requirements for study-specific data sharing. Network partners stored patient data securely behind HIPAA-compliant firewalls. The network provided deidentified data to research studies using stringent security procedures.

Stakeholder Engagement

REACHnet worked with patients, clinicians, and other stakeholders to inform research projects and community engagement opportunities. REACHnet convened standing and ad hoc advisory groups on general or condition-specific topics for input on research priorities and activities. Patient partners co-led several community-facing activities such as social media outreach and the development and dissemination of a patient-centered curriculum to train community members to become engaged in the research process. REACHnet created a patient network called Health in Our Hands (HiOH) to engage the broader community in research as advisors or study participants. HiOH members consent to be contacted about health research, including dissemination of results as well as opportunities to enroll in studies or collaborate with researchers as patient partners. Community members may join HiOH online or be recruited by HiOH ambassadors in community or healthcare settings.

Network Demographics

REACHnet has data for almost 6.4 million patients at four health systems in Texas and Louisiana. Data are available since 2010.

Demonstrating Research Capacity

While a Partner Network in PCORnet, REACHnet participated in five interventional trials, three observational studies, three PCORnet rapid-cycle research projects, one methodology project, and two clinical claims data-linkage pilot projects. REACHnet has also provided data services and health system stakeholder engagement to academic partners and industry clients for various retrospective observational studies. REACHnet collaborated with public and private insurers to enable data linkage for research projects.

Future Opportunities

To support ongoing research, REACHnet worked to

• Expand patient engagement through HiOH
• Test innovative, pragmatic approaches for patient recruitment into research studies
• Improve data linkage capacity, including implementing a global patient identifier
• Collaborate across PCORnet and with external partners
• Develop a business model to provide research entities with opportunities to collaborate with network partners and leverage REACHnet’s assets and services

REACHnet plans to continue collaborating with other PCORI-funded groups to expand the network’s research portfolio. REACHnet also joined the National Institutes of Health-funded Implementing Genomics in Practice (IGNITE) Pragmatic Clinical Trials Network to conduct pharmacogenomics clinical trials with partners nationwide. Finally, REACHnet is a co-leader of the PCORnet Surveillance Program, which aims to build and demonstrate capacity for disease surveillance using the national clinical data infrastructure.