REACHnet 3.0: Optimizing Infrastructure for Conducting Patient-Centered Outcomes Research

Research Action for Health Network (REACHnet) is one of several clinical research networks (CRNs) nationwide in PCORnet^®, the National Patient-Centered Clinical Research Network. The team’s mission is to enable the conduct of patient-engaged, multi-site research with enhanced efficiency in real-world healthcare delivery systems. REACHnet includes electronic health record data for nearly 8 million patients from four partner health systems: Ochsner Health, Tulane Medical Center, University Medical Center New Orleans, and Baylor Scott & White Health. Collectively, these health systems serve a diverse patient population across Louisiana and Texas, with 35 percent racial and ethnic minorities. Two academic partners, Pennington Biomedical Research Center and the Louisiana State University Health Sciences Center, support REACHnet health systems in research generation, implementation, and leadership or partnership. REACHnet also has partnerships with three health plans—Blue Cross Blue Shield Louisiana, Humana, and CVS Health—so that data from electronic health records and health insurance claims can be used together in research.

REACHnet is governed by a steering committee that makes decisions about the network, which includes a representative from each member organization as well as two patient community members. The network’s Research Participation Policy and data sharing and use agreement guide how the network operates. The policy outlines procedures for making decisions about research partnerships. The data sharing and use agreements describe how research partners may access data from REACHnet. Louisiana Public Health Institute is the REACHnet Coordinating Center, which manages network activities such as implementing various research studies, engaging patients, providers, and other stakeholders, and storing data with appropriate privacy and security protections.

REACHnet values and prioritizes the meaningful inclusion of patients and caregivers in the research process. With its commitment to patient-centeredness, REACHnet offers opportunities for patients to get involved, not just as study participants, but also as advisors that bring expertise from their own lived experience to inform research. The network fosters direct connections between research teams and the patient community to cultivate patient-centeredness, from the generation of research topics to dissemination of findings that may help patients make important decisions about their own health care. Moreover, the network is designed to make it faster and easier to conduct research that addresses healthcare questions of critical importance to patients and clinicians and contributes to the evidence base that will inform more effective healthcare decision making and improve population health.

REACHnet works with patients, healthcare providers, and other stakeholders to inform research projects and to guide its strategies to meaningfully involve patients and caregivers in the research process. REACHnet has a patient network called Health in Our Hands (HiOH) that includes people representing the network’s patient population demographically, geographically, and in burden of disease. HiOH trains community members to become engaged in the research process and hosts interactive meetings to facilitate direct engagement between researchers and patients. Researchers are invited to present their studies and gain valuable input from the patients’ perspectives to inform key aspects of their research such as designing appropriate interventions and measuring outcomes that people representing the population of interest care about most. The network’s two patient co-investigators as well as a Community Health Advisory Board co-develop strategies for ongoing engagement of the patient community through HiOH’s activities.

REACHnet also convenes condition-specific advisory groups for input on research priorities and activities. For example, the Diabetes Advisory Group, which includes patients, caregivers, and clinicians, has advised multiple diabetes-focused studies and research proposals initiated by REACHnet partners. The network’s engagement services also include one-on-one support for patient partners and guidance for research teams on effective engagement practices for specific projects. The drive to support meaningful inclusion of patient stakeholders ensures that REACHnet project aims and results are relevant to and address the issues most critical to the populations impacted by REACHnet studies.