Currently submitted to: Journal of Participatory Medicine
Date Submitted: Sep 22, 2020
Open Peer Review Period: Sep 22, 2020 - Nov 17, 2020
(currently open for review)
Challenges and Lessons Learned through Initiating Patient Engagement with Migrant People Living with HIV During the COVID-19 Outbreak
Background Patient engagement (PE) refers to the meaningful and active involvement of patients and other stakeholders (i.e. family members) in the conduct of research and transfer of knowledge. PE is usually an immersive experience for both stakeholders and researchers, based on direct dialogue and equitable partnerships. However, in reaction to the COVID-19 pandemic, social distancing measures have been introduced globally. These measures, which may remain in effect for a long duration, or be re-introduced periodically, prevent in-person gathering, and thereby, foster dependence on technologies to remain connected remotely. This affects PE methods. Thus, an understanding of how remote work affects PE is necessary. Main Text In this narrative, we present the experience of a research team that began engaging an advisory committee of recent migrant people living with HIV in Montréal, Canada, amidst social distancing measures put in place due to COVID-19. We highlight three major challenges faced by our team of researchers and the advisory committee. These challenges include (1) ensuring access to technology for both patients and researchers; (2) managing disclosure and comfort with online tools; and (3) creating meaningful communication and peer-to-peer rapport. Subsequently, we list the main lessons we gained through responding to these challenges: (1) the importance of allowing time, dialogue, and reflection to enable adjustment to the new context we are working in; (2) the need to evolve our teamwork dynamics; and (3) implementing hands-on experiences for patients is essential to establishing feelings of meaningful engagement Conclusion PE is not an easy task and its implementation can become even more complex amidst social distancing measures and other disruptions caused by COVID-19 (i.e. fear of contracting COVID-19). However, if appropriate methods are taken up, PE can serve as an instrumental pillar for research activities that seek to create an impact in communities and populations.
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