Patient lead users experience of the COVID-19 pandemic: a qualitative interview study (17 August 2022)

Summary

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. This study in the BMJ Open aimed to explore patient lead users’ experiences and engagement during the early Covid-19 pandemic in Sweden, from 1 June to 14 September 2020.

The authors recruited 10 patient lead users living with different long-term conditions and undertook qualitative in-depth interviews with each of them. They found that health systems were not able to fully acknowledge and engage with the resource of patient lead users during the pandemic, event though they could be a valuable resource as a complementary communication channel.