Best Practices for Virtual Engagement of Patient-Centered Outcomes Research Teams During and After the COVID-19 Pandemic: Qualitative Study (Preprint)

Abstract

BACKGROUND Patient-Centered Outcomes Research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. Traditionally done in person, COVID-19 has forced PCOR teams to engage via online platforms. Similarly, virtual engagement is the only safe choice for members of the cystic fibrosis (CF) community who spend their lives living under strict infection control guidelines. In the absence of universal best practices, the CF community developed its own guide to help PCOR teams engage virtually. OBJECTIVE To identify the important attributes, facilitators, and barriers to teams when selecting online platforms. METHODS We conducted semi-structured interviews with CF community members, non-profit stakeholders, and researchers about their experiences using online tools including the effectiveness, efficiency, satisfaction with, and confidence using each platform. Interviews conducted via Zoom conferencing were audio recorded and transcribed. We identified key themes using content analysis with an iterative inductive and deductive coding process. RESULTS Fifteen participants reported using online platforms for meetings, project management, document sharing, scheduling, and communication. When selecting online platforms, participants valued accessibility, ease of use, and integration of the platforms with other platforms. Participants thought successful online collaboration utilized platforms that resemble in-person interactions, recognized team member technological literacy levels, provided intentional alignment of platforms with collaboration goals, and achieved team member buy-in to adopt new platforms. CONCLUSIONS Successful online PCOR engagement requires using multiple platforms in order to fully meet the asynchronous or synchronous goals for the project. This study identified key attributes beneficial for conducting PCOR online, as well as common challenges and solutions to using online platforms. Our study findings provide best practices for selecting types of platforms and lessons learned from online PCOR collaborations.