Co-designing a 'Long COVID Education and Awareness Hub:' Addressing psychosocial needs across the continuum of care

Background: Up to 35% of people who have contracted the acute COVID-19 virus are experiencing prolonged symptoms, now known as Long COVID (LC)1. Our data supports that living with LC significantly impacts one’s physical health and cognition, thereby affecting one’s psychosocial well-being (social relationships, emotional wellness, and space/time for fun and joy (leisure)). Our research team worked collaboratively with LC stakeholders (e.g., people with long COVID (PLC), caregivers (CG), health and social care providers (HSCPs), insurance and disability workers, employers, members of the public) and patient-partners to co-design and develop an evidence- and experience-informed ‘LC Education and Awareness Hub’ (www.LivingWithLongCOVID.ca) that aims to address LC care needs across the continuum (i.e., acute, in/out-patient, community). Relevance and target audience: In alignment with ICIC’s pillars of integrated care, the relevance of this work in a global context will help advocate for LC population health needs by helping reduce health disparities, platform the voices of people with lived experience, and highlight the benefits of co-design methods to identify common goals and values. This work also has the potential to increase workforce capacity and capability through collaborative and integrated approaches across the care continuum. This project aims to leverage LC-specific resources and supports towards target audiences (i.e., provider-, patient-, caregiver-, and public-facing) to help optimize integrated rehabilitation supports. Methods: 26 key stakeholders (n=12 PWLC, n-4 CG and n=10 HSCPs) were recruited to participate in 8 virtual co-design2 workshops (May to July, 2023). Participants were engaged in a series of brainstorming, discussion, and consensus-building activities using personas and journey maps as tools for data collection. Outcome(s): Four key areas were identified as needing to be addressed within the ‘hub:’ (1) education, (2) advocacy and public health messaging, (3) health and social care reform and care integration, and (4) peer support. Our group also brainstormed meaningful knowledge translation outcomes that will be mobilized and disseminated into practice to better support all LC stakeholders. The ‘LC Education and Awareness Hub’ and KT outcomes will be digitally housed online (www.LivingWithLongCOVID.ca). Conclusion: This research can raise awareness of LC globally, identify the network of integrated support needed for LC care provision, and address the specific needs of all LC stakeholders involved across the continuum of care. In alignment with the ICIC24 conference theme, our person-centered and patient-integrated approaches to this project creates more potential for this work to ‘make integrated care a reality’ for people living with, or supporting someone with, LC.