by Oonagh Cousins

In January 2024, I began a Social Sciences Engagement Fellowship at the University of Oxford with Beth Greenhough and Maaret Jokela-Pansini, exploring how social science methods can be used to support and engage with people with Long Covid. I joined the research project as a patient representative and member of the charity Long Covid Support.

This is a meaningful opportunity for me. In March 2020, having just been pre-selected for the British Rowing Team for the Tokyo Olympics, I caught Covid-19. This infection triggered a three year journey with Long Covid, which eventually resulted in my retirement from professional sport at the end of 2022. Through this experience I have learnt about the critical need to improve the treatment and management of Long Covid. More and better research from all fields of academia will be needed to achieve this. So, this project is my first job since retiring from professional sport and an opportunity to be involved in work focused on improving the lives of those with Long Covid.

Starting this project I was unsure exactly what work I would be doing – I was joining the team not as an academic but to bring a patient perspective. Beth and Maaret had closely collaborated with me and other patient partners when putting together the research questions and the grant application, but I wasn’t sure how much work I could personally do once we started the actual research. I quickly learnt that the project would continue to be run in a very collaborative and inclusive way, in line with the approach known as ‘participatory research’. This is a methodology of research in which those traditionally seen as the subjects (in this case Long Covid patients) are engaged at various stages of the research process, from defining problems all the way to disseminating findings. Patients are engaged as equal partners, acknowledging their expertise and perspectives as valuable assets in generating knowledge. This collaborative, egalitarian approach challenges the hierarchical academic processes that usually take place in universities. It has been inspiring to already see the advantages of this approach.

Improving Outputs

The first part of our project is a research agenda setting exercise, generated by a survey shared with various stakeholders in the Long Covid community. The aim is to develop a social science research agenda that puts the needs and concerns of people with Long Covid centre stage. I have been able to contribute to this effort in different ways. For instance, I have been able to suggest stakeholders that Beth and Maaret were less aware of and draw on my networks to help build links with these groups. I can also make ‘Long Covid language’ adjustments to the wording of the survey, hopefully improving patients’ capacity to share their voice. The cumulative result is that we are more likely to collect perspectives that may otherwise have been missed and our research agenda should better reflect the needs of the patient community.

The Process Itself Generates Positive Impacts

Beyond a more representative research output, it has been particularly interesting to observe how the collaborative process itself can generate various positive impacts. Through this collaboration, I am gaining extensive insights into academia. As Beth and Maaret guide me through the project, I am learning about funding processes, ethics applications, social science methodology and the dissemination of findings. By working in the department, I am meeting other researchers, attending seminars, being part of conversations, and generally being immersed in the culture and language of academia. This hands-on experience builds an understanding that is difficult to obtain via other means.

This understanding then improves the capacity of patients to do advocacy work which many, including myself, are involved in. A crucial part of improving the lives of Long Covid patients will involve significantly more and better research, and patients are actively working towards this. I am able to share my new knowledge base and network of contacts with those I work with in the patient community, which will improve how effective our collective advocacy can be. Indeed, I have already had constructive meetings with people I have met through the university’s network.

Furthermore, the project is improving trust and mutual understanding between the charity Long Covid Support and the University. By building stronger relationships between these organisations, both parties can leverage each other’s expertise and resources more effectively and support further collaboration. This increases the possibility of fruitful participatory research projects in the future.

Rectifying Power Dynamics

The result of all of the above is that the participatory approach serves to empower patients to drive positive change. This stands in contrast to much of the Long Covid patient experience – we very often find ourselves at the wrong end of a power dynamic when it comes to influencing decisions about our own healthcare or when advocating for wider changes. This is despite the fact that it is our own health at stake and that we have considerable expertise to contribute to decision making. The participatory research approach is thus a means to rectify this power imbalance and in doing so offers a pathway to better outcomes for all those living with Long Covid.

Next Steps

Looking forward, we will be collating the responses to our first survey and refining this into one list of potential research questions. We will then invite community members to rank these research questions based on perceived importance, and we hope to publish this as a finalised research agenda.

We are also developing a body mapping toolkit with the aim of aiding patients in expressing their experiences. We hope this tool can be used in academic research settings, facilitating communication with healthcare professionals, and providing support services for patients.

I am excited about the work ahead and its potential to make a difference, and deeply appreciate the opportunity to work with Beth and Maaret.