Setting a social science research agenda for Long Covid. A collaborative exercise with stakeholders and people with lived experience of Long Covid

Oonagh Cousins¹Maaret Jokela-Pansini^2,3*Nisreen Alwan^4,5Ella Barnard¹Jo Dainow¹Caroline Dalton⁶Gail Davies⁷Mark A Faghy⁸Eileen Gilmour⁹Ian Patel⁹Ondine Sherwood¹⁰Lotus Westerhof⁹Beth Greenhough¹¹

• ¹Long Covid Support, London, United Kingdom
• ²School of Geography and the Environment, University of Oxford, Oxford, United Kingdom
• ³Universitat Zurich, Zürich, Switzerland
• ⁴University of Southampton Faculty of Medicine, Southampton, United Kingdom
• ⁵University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom
• ⁶Sheffield Hallam University College of Health Wellbeing and Life Sciences, Sheffield, United Kingdom
• ⁷University of Exeter, Exeter, United Kingdom
• ⁸University of Derby Human Science Research Centre, Derby, United Kingdom
• ⁹Patient author, London, United Kingdom
• ¹⁰Long Covid SOS, London, United Kingdom
• ¹¹University of Oxford School of Geography and the Environment, Oxford, United Kingdom

Introduction Our objective was to understand how social scientific research could best address the needs and concerns of patients, families, carers, healthcare professionals, academics, private and public sector professionals, and volunteers from Long Covid charities and support groups and people with lived experience of Long Covid. We worked with different stakeholders to develop a list of research priorities that particularly focused on social science as this is where our collective expertise lies, but similar methods could also be used to set research priorities in the natural sciences, medicine or the humanities. Methods We used purposive sampling and conducted two online surveys. The first online survey (N=57) asked participants to identify their top five questions of concern, which resulted in a list of 253 questions. These questions were then consolidated, refined and edited down to 55 questions, categorised by topic. In the second survey (N=66), we asked participants to select and rank their top 10 questions from this refined list. The final output was a ranked list of nine questions based on those prioritised by at least 50% of the respondents. Results Nine research questions were developed concerning i) treatments, therapies, and strategies; ii) financial support; iii) repeated reinfections; iv) training of healthcare professionals; v) mental health impact; vi) future of research funding; vii) airborne transmissions of COVID-19; viii) developing therapeutics informed by patients' experiences; and ix) socioeconomic impacts of Long Covid. Many of the issues raised mirror those discussed in previous work in the UK and internationally, but additional novel themes emerged, underscoring the value of this collaborative approach. Conclusion 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.