Over 400 million people worldwide experience or have experience Long Covid. Existing research points to patient experiences, public health impacts, a lack of standardised diagnostic and treatment protocols and pathways and the need for patient involvement as key areas of concern. But what is not as clear is the extent to which these priorities are mirrored in the concerns expressed by those researching and living with Long Covid.
To answer this, we carried out a participatory agenda-setting exercise that brought together people with lived experience of Long Covid, family members and carers, healthcare professionals, academics, public and private sector professionals, and volunteers from Long Covid charities and support groups. By centring these diverse voices, our aim was to ensure that future research priorities reflect lived realities, not just academic or clinical perspectives.
We used a participatory research design and conducted two online surveys using purposive sampling. In the first survey, 57 participants were asked to submit their top five research questions or concerns related to Long Covid. This resulted in 253 questions, which we refined into a list of 55 questions grouped by themes. In the second survey, completed by 66 participants, respondents were asked to select and rank their top ten questions from this refined list. From this process, we identified nine priority research questions, each chosen by at least half of the respondents.
Results: Nine key priorities
The final list highlights a broad range of social, economic and health-related concerns. The nine priority areas focus on:
- Treatments, therapies and coping strategies
- Financial support and social security
- The impact of repeated COVID-19 reinfections
- Training and support for healthcare professionals
- Mental health impacts of Long Covid
- The future of research funding
- Airborne transmission of COVID-19
- Developing treatments informed by patients’ lived experiences
- The wider socioeconomic impacts of Long Covid
Many of these themes reflect issues already discussed in UK and international research. However, participants also raised new and underexplored concerns such, demonstrating the added value of involving those directly affected in shaping research agendas. Our survey revealed the value of including the voices of diverse individuals affected by Long Covid and those working in this area and highlighted priorities for social science in the field of Long Covid research.
Cousins, O., Jokela-Pansini, M., Alwan, N.A., Barnard, E., Dainow, J., Dalton, C., Davies, G., Faghy, M.A., Gilmour, E., Patel, I. and Sherwood, O., 2025. Co-creating a social science research agenda for Long Covid. Frontiers in Public Health, 13, p.1654488.
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Visualising Long Covid 