Chronic Airway Disease Patients’ Challenges During a Virtual Study: Insights from Participants & Researchers

Abstract

Rationale: The COVID-19 pandemic has decreased the feasibility of in-person research. Despite this, widespread technological accessibility and ease-of-use make virtual research a viable alternative. Studies conducted virtually offer researchers and participants flexibility, convenience, and geographic accessibility. However, there are inherent challenges that may influence the research process, particularly for participants. This study examines patients' challenges with participating in a virtual research interview from the perspectives of researchers and patients. Methods: We conducted an exploratory community-based sub-study during a concurrent study to validate a function-based health literacy measurement tool (questionnaire) with chronic airway disease patients. Participants received and accessed study materials virtually and responded to the questionnaire over-the-phone;some participants were re-tested for questionnaire reproducibility. Initially, participants and researchers independently responded to 6 open-ended questions post-interview regarding challenges experienced during the study. Responses informed the development of a comprehensive, 18-question checklist addressing participant challenges. In subsequent interviews, research assistants administered the checklist, capturing quantitative data and verbatim quotes. Researchers' observation notes, recorded during each interview, and team teleconference notes were reviewed to provide researchers' perspectives on participant challenges. Thematic analysis of qualitative data was conducted using NVivo (QSR International, Version 12). Challenges were coded inductively and quantified on the basis of whether a researcher or patient had indicated a patient challenge, and cross-referenced with detailed observation notes. Quantitative analyses were conducted using R (R Core Team, 2019). Results: Initial interviews (n=185) and re-tests (n=110) were analysed. Quantified challenges were compared across self-reported gender, condition (asthma, chronic obstructive pulmonary disease (COPD) & asthma-COPD overlap (ACO)), education level, first language, age, ethnicity, disease duration, and previous disease-specific education. In 76% of interviews, participants experienced one or more challenges;31 unique challenges were identified. As an example, Table 1 contains the top 5 problems experienced by participants, across disease and self-reported gender, during initial interviews recorded using the open-ended question set. Qualitative analysis revealed that participants primarily experienced challenges with technology, communication (verbal & online), and instruction clarity (e.g., when/how to use study materials). Conclusions: Participants experienced a variety of challenges throughout the virtual study. Considering potential friction points for participants and possible solutions prior to starting the study by involving researchers, key informants, and participants can enhance the study process. Developing simple, informative study materials and instructions may help to mitigate challenges inherent to virtual research and facilitate a seamless, participant-friendly study experience given the unfamiliarity of this research format. .