Abstract

BackgroundPatient-centered outcomes research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. Similarly, virtual engagement is the only safe alternative for members of the cystic fibrosis (CF) community, who spend their lives following strict infection control guidelines and are already restricted from in-person interactions. In the absence of universal best practices, the CF community has developed its own guidelines to help PCOR teams engage through web-based platforms.ObjectiveThis study aimed to identify the important attributes, facilitators, and barriers to teams when selecting web-based platforms.MethodsWe conducted semistructured interviews with CF community members, nonprofit stakeholders, and researchers to obtain information regarding their experience with using web-based platforms, including the effectiveness and efficiency of these platforms and their satisfaction with and confidence while using each platform. Interviews conducted via Zoom were audio recorded and transcribed. We identified key themes through content analysis with an iterative, inductive, and deductive coding process.ResultsIn total, 15 participants reported using web-based platforms for meetings, project management, document sharing, scheduling, and communication. When selecting web-based platforms, participants valued their accessibility, ease of use, and integration with other platforms. Participants speculated that successful web-based collaboration involved platforms that emulate in-person interactions, recognized the digital literacy levels of the team members, intentionally aligned platforms with collaboration goals, and achieved team member buy-in to adopt new platforms.ConclusionsSuccessful web-based engagement in PCOR requires the use of multiple platforms in order to fully meet the asynchronous or synchronous goals of the project. This study identified the key attributes for the successful practice of PCOR on web-based platforms and the common challenges and solutions associated with their use. Our findings provide the best practices for selecting platforms and the lessons learned through web-based PCOR collaborations.

Highlights

  • Patient-centered outcomes research (PCOR) entails patients and stakeholders partnering with researchers to define research questions, design studies, interpret findings, and generate schema to disseminate information among patients and communities [1]

  • Successful web-based engagement in PCOR requires the use of multiple platforms in order to fully meet the asynchronous or synchronous goals of the project

  • This study identified the key attributes for the successful practice of PCOR on web-based platforms and the common challenges and solutions associated with their use

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Summary

Introduction

Patient-centered outcomes research (PCOR) entails patients and stakeholders partnering with researchers to define research questions, design studies, interpret findings, and generate schema to disseminate information among patients and communities [1]. During the COVID-19 pandemic, PCOR teams must consider the management of team dynamics and the technology they would use to facilitate successful collaboration. While PCOR is traditionally conducted in person, social distancing is recommended in most cities and states during the COVID-19 pandemic, forcing PCOR teams to collaborate on web-based platforms for continued engagement. Studies examining virtual team science emphasize the need for web-based technology for meetings, scheduling, day-to-day correspondence, task management, and document sharing, among other purposes [2,7]. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. In the absence of universal best practices, the CF community has developed its own guidelines to help PCOR teams engage through web-based platforms

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