New study: “Long Covid: Online patient narratives, public health communication and vaccine hesitancy”

A new study published in Digital Health by researchers Esperanza Miyake (University of Strathclyde) and Sam Martin (University of Oxford) examines online patient narratives and public health communication with Long Covid. Using a wide range of social media data from Twitter, Facebook, Reddit, and other platforms, the researchers use textual analysis to characterize the discussions around Long Covid. The authors argue that experts and doctors need to listen to patient experiences in order to provide better support to patients.

As the authors conclude:

The strengths of our online analysis of Long Covid narratives contributes towards understanding some of the experiential, emotional and practical dimensions of Long Covid, identifying four main areas that need further urgent attention and reconsideration: a) the time-frames assigned to Covid-19; b) the range of symptoms which affects testing/diagnoses; c) the emotional/intellectual impact on Long Haulers; d) lack of resources and information. Whilst services and support groups have begun to emerge, we argue that until official definitions and understandings surrounding Covid-19 are reconsidered, doctors and other services will be limited in their capacity to provide better support, guidelines and social measures for those suffering from Long Covid, as well as their carers. As vaccines are rolled out whilst new strains of Covid-19 spread globally, the next steps we take in dealing with issues relating to patient wellbeing and care – not to mention a greater understanding of Covid-19 – depend on how much we have learnt our lesson in 2020, to begin with the solid foundational knowledge generated by patients with Long Covid, an expansion of more Long Covid support services, and greater collaboration between HCPs and patients.