Patient lead users experience of the COVID-19 pandemic: a qualitative interview study

OBJECTIVES: Patient lead users can be defined as patients or relatives who use their knowledge and experience to improve their own or a relative’s care situation and/or the healthcare system, and who are active beyond what is usually expected. The objective of this study is to explore patient lead users’ experiences and engagement during the early COVID-19 pandemic. DESIGN: Qualitative in-depth interviews with a cross-sectional time horizon. SETTING: The early COVID-19 pandemic in Sweden, from 1 June through 14 September, 2020. PARTICIPANTS: A total of 10 patient lead users were recruited from the Swedish patient lead users (spetspatient) network. All participants were living with different long-term conditions and matched the definition of being patient lead users. RESULTS: We found that during the early pandemic, patient lead users experienced that they no longer knew how to best manage their own health and care situations. On an individual level, they described an initial lack of knowledge, new routines, including a change in their health and an experience of people without a disease being in the same situation as them, for a while. On a systemic level, they described a fear of imminent unmet-care backlogs and decreased opportunities for sharing patient perspectives in care organisation, but also described increased networking. CONCLUSIONS: Patient lead users can be seen as an emerging community of practice, and as such could be a valuable resource as a complementary communication channel for an improved health system. The health systems were not able to fully acknowledge and engage with the resource of patient lead users during the pandemic.