Promising Patient-Engagement Practices Used by National Research Networks at the US Veterans Health Administration: Perspectives of Veterans, Staff, and Research Leaders.

INTRODUCTION

Active involvement of patients is an essential feature of learning health systems and patient-centered research. Research networks and healthcare organizations lack guidance on best practices for developing and sustaining patient engagement infrastructure. We sought to examine perspectives on promising Veteran-engagement infrastructure and practices used by US Veterans Affairs (VA) research networks.

METHODS

We solicited expert opinion from three separate panels of Veterans, VA engagement staff, and VA research leaders using a modified Delphi process comprising two rounds of online surveys and a set of virtual group meetings or individual interviews. In a prior study, we identified promising engagement practices in use by VA national research networks. We analyzed survey data with predefined rating categories to determine which practices the three expert panels consistently endorsed. We used thematic analysis to compare experts' perspectives across panels and to identify emergent cross-cutting themes.

RESULTS

Veterans, VA engagement staff, and VA research leaders consistently endorsed 66% (29/44) of the research networks' promising Veteran-engagement practices. Summarized, these practices formed five recommended engagement-related responsibilities for VA research networks. Some network engagement practices were inconsistently endorsed (13/44, 30%), and two practices (4%) received overall ratings of neutral or unsure by at least one expert panel. Network practices not consistently endorsed varied by expert panel, but panelists' comments reflected three overarching themes: constraint of resource availability, commitment to respectful and meaningful engagement processes, and concern for potential burden on partners.

CONCLUSIONS

Panelists' perspectives highlight challenges regarding how to best invest limited patient-engagement resources within research and learning health system organizations. Research network engagement infrastructure can help expand the capacity and culture of patient-centered research and care. Organizations seeking to function as learning health systems need to devote planning time, skilled staff, and funds to develop and sustain patient-engagement infrastructure tailored to their context.