Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Oct 12, 2020
Date Accepted: Dec 14, 2020
Date Submitted to PubMed: Mar 12, 2021
Best practices for virtual patient-centered outcomes research team engagement during the era of COVID-19 and beyond: A qualitative research study
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.
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© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.