Addressing the challenges of conducting community-engaged research during COVID-19: Rapid development and evaluation of a COVID-19 Research Patient and Community Advisory Board (PCAB).

Introduction: We created a COVID-19 Research Patient and Community Advisory Board (PCAB) to provide patient and community input into clinical and translational research studies. The purpose of this article is to describe the PCAB creation, implementation, and evaluation. Methods: We identified PCAB members who had participated in previous stakeholder engaged activities at our institution and invited their participation. We created a systematic consultation process where researchers could submit plain language research summaries and questions for the PCAB. A facilitated 1-hour virtual consultation was then held where PCAB members provided feedback. We assessed satisfaction of PCAB members and researchers who received consultations using surveys. We also reviewed video recordings of PCAB consultations and reflections from team meetings to identify key lessons learned. Results: Twenty-seven PCAB members took part in 23 consultation sessions. Twenty-two completed an evaluation survey (81% response rate). Most members agreed or strongly agreed their opinions were valued (86%), it was a productive use of time (86%) and were satisfied (86%). Nineteen researchers completed an evaluation survey (83% response rate). Researchers reported positive experiences of working with the PCAB. Additional insights include limited funding in COVID-19 research for equitable community engagement, deficiencies in researcher communication skills, and a lack of cultural humility incorporated into study activities. Conclusions: PCAB members provided recommendations that maximized the patient-centeredness and health equity focus of COVID-19 research. The detailed description of the process of developing, implementing, and evaluating our PCAB can be used as a template for others wishing to replicate this engagement model.

Online Patient-Provider E-cigarette Consultations: Perceptions of Safety and Harm.

INTRODUCTION: E-cigarettes are popular and unregulated. Patient-provider communications concerning e-cigarettes were characterized to identify patient concerns, provider advice and attitudes, and research needs. METHODS: An observational study of online patient-provider communications was conducted January 2011-June 2015 from a network providing free medical advice, and analyzed July 2014-May 2016. Patient and provider themes, and provider attitudes toward e-cigarettes (positive, negative, or neutral) were coded qualitatively. Provider attitudes were analyzed with cumulative logit modeling to account for clustering. Patient satisfaction with provider responses was expressed via a Thank function. RESULTS: An increase in e-cigarette-related questions was observed over time. Patient questions (N=512) primarily concerned specific side effects and harms (34%); general safety (27%); e-cigarettes as quit aids (19%); comparison of e-cigarette harms relative to combusted tobacco (18%); use with pre-existing medical conditions (18%); and nicotine-free e-cigarettes (14%). Half of provider responses discussed e-cigarettes as a harm reduction option (48%); 26% discussed them as quit aids. Overall, 47% of providers' responses represented a negative attitude toward e-cigarettes; 33% were neutral (contradictory or non-committal); and 20% were positive. Attitudes did not differ statistically by medical specialty; provider responses positive toward e-cigarettes received significantly more Thanks. CONCLUSIONS: Examination of online patient-provider communications provides insight into consumer health experience with emerging alternative tobacco products. Patient concerns largely related to harms and safety, and patients preferred provider responses positively inclined toward e-cigarettes. Lacking conclusive evidence of e-cigarette safety or efficacy, healthcare providers encouraged smoking cessation and recommended first-line cessation treatment approaches.