Patient engagement activities and infrastructure among US Veterans Affairs national research networks

Abstract: Background: Meaningful engagement of patients in the research process is a growing component of learning health systems; however, few studies have examined efforts to facilitate or foster patient-engaged research among large healthcare organizations. Objective: To describe patient engagement activities and infrastructure among the seven national research networks funded by US Veterans Affairs (VA) Health Systems Research (HSR). Design: We conducted an environmental scan comprised of (1) structured searches of peer-reviewed publications and other publicly available documents and (2) qualitative, semi-structured group interviews with VA HSR research network representatives. Participants: Staff and leaders with knowledge of their research network’s engagement-related activities. Approach: We used principles of thematic analysis and content analysis to code and categorize networks’ engagement activities and key considerations identified through the environmental scan. Key Results: We identified 129 discrete engagement-related activities across the seven VA HSR research networks in three domains of (1) facilitating patient-engaged research, (2) network engagement infrastructure, and (3) building and maintaining relationships with partners. The number and types of reported activities varied across the networks. All five networks with a current or planned patient engagement group budgeted for staff effort and patient compensation, and offered patient engagement services that spanned research and care implementation projects. We identified five themes essential to engagement infrastructure (supportive network environment; team environment and relationship building; patient engagement group characteristics; flexibility and adaptability; and efficiency). Conclusions: This work documents patient engagement activities and infrastructure among seven VA-funded national research networks within VA’s integrated learning health system. Network representatives’ experiences highlight important considerations for developing and sustaining patient engagement infrastructure. Future research is needed to examine quality, outcomes, and costs of patient engagement services within different contexts, and how this infrastructure could best be deployed to meaningfully incorporate patient perspectives across learning health system improvement cycles.