Co-creating a social science research agenda for Long Covid

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, categorized 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 prioritized 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.

What is it about?

The study aimed to identify research priorities in the social sciences concerning Long Covid by collaborating with patients, families, carers, healthcare professionals, and volunteers involved with Long Covid support groups. Using purposive sampling, the study conducted two online surveys to gather input from stakeholders, identifying 253 questions of concern, which were then refined into 55 categorized questions. In the second survey, participants ranked their top 10 questions from this list, resulting in nine final research questions prioritized by at least 50% of respondents. These questions focused on areas such as treatments, financial support, reinfections, healthcare training, mental health, research funding, airborne transmission, patient-informed therapeutics, and socioeconomic impacts. The study highlighted the importance of incorporating diverse perspectives in research prioritization and outlined a collaborative agenda for future social scientific research on Long Covid. The methods employed involved survey design, participant recruitment, and the prioritization of research questions through a structured four-phase process.

Why is it important?

This study is important as it addresses the pressing need to prioritize research on Long Covid, a condition affecting millions globally, by focusing on social scientific aspects that have been underexplored. By involving a diverse group of stakeholders, including patients, healthcare professionals, and volunteers, the research ensures that the identified priorities reflect the real-world concerns and needs of those directly impacted by Long Covid. This collaborative approach not only highlights crucial areas requiring immediate attention but also sets a precedent for similar methodologies to be applied in other research fields, thereby enhancing the relevance and applicability of scientific investigations to societal challenges.

Key Takeaways:

1. Collaborative Priority Setting: The study effectively engaged various stakeholders to develop a comprehensive list of research priorities, underscoring the importance of collaborative efforts in addressing complex health issues like Long Covid.

2. Diverse Research Focus: Nine key research questions were prioritized, covering areas such as treatments, financial support, and mental health impacts, illustrating the multifaceted nature of Long Covid and the need for a broad approach in research.

3. Novel Themes Identified: While some issues mirrored previous findings, the study also uncovered new themes, highlighting the value of including diverse perspectives to enrich the research agenda and ensure it addresses emerging concerns.