Not just numbers - how data is supporting an understanding of long Covid

Agent of change

The theme of this year’s Love Data Week is Agent of Change, exploring how data can be used to bring about changes that matter. In various ways data, in all of its forms, enables us to build a picture, gather evidence and plan future interventions.

In my area of research, this is working with long Covid patients to understand what hinders their ability to live a ‘normal’ life and the impact this has on them. The data that we collect is the vehicle that gives us the information we need to better understand the issues, allowing us to work objectively to ascertain the best approaches to support patients.

The lived experience

Data isn’t always numbers on a spreadsheet. Working first-hand with patients, our research is enriched by capturing their stories – the lived experience – which is fundamental to addressing the challenges that patients face.

From an interventional perspective, data allows to understand and monitor changes over time so that we can quantify if the plans that have been put in place are helping to address the challenges.

One example of a project where data can and will support the drive for change is our work with Long Covid Kids. This organisation has launched a series of research projects to determine the challenges faced by children and young people living with long Covid. We recently teamed up to review the experiences of children and young people when they have been accessing healthcare settings to address their long Covid.

Our role in this project is to analyse the data and make the recommendations that need to be taken forward to improve services. It is fair to say that long Covid services are embryonic and in the early stage of development, for a condition that we do not understand in its entirety. So, this work is important to capture and utilise end-user feedback to ensure that we continue to refine and develop services collaboratively.

On a journey

The current findings do not make for good reading; this is not the fault of any organisation, it is a mere reflection of our journey to understand and improve patient outcomes in long Covid. The data demonstrates excessive waits for referrals to long Covid clinics and a lack of coordination between the different clinical specialities that are needed to address the symptom profiles. There are dedicated teams working in this area – we are just too early in our journey to have the broad and encompassing services that children and young people with long Covid need. The research and data will help support the case for these.

Like anybody that is suffering with long-lasting and debilitating symptoms, the data highlights a desperation from patients and their families to restore their pre-Covid-19 quality of life. The information and case studies that the charity has collected over the last three years paint a devastating picture of the impact that long Covid has on all aspects of children and young people’s lives. Importantly, something that we discuss regularly as a team is the lasting impact this will have on these young people who will have lost time within school, inevitably impacting their education. While we focus on the current situation, the evidence we are gathering is enabling us to look forward and start to anticipate future scenarios.

Fixing priorities

One of the steps we need to take now is to organise and establish a direction for the important research that is needed to better understand the pathophysiologic and diagnostic detail of long Covid. Only when we truly understand the condition can we work to improve patient outcomes. While this will take time, I am delighted that a new piece of work is being commissioned by NHS England to establish research priorities for children and young people living with long Covid.

The other challenge we have is the here and now - with that in mind we need to engage and collaborate with clinical services to establish interdisciplinary support that helps people to manage their condition while we wait for the development of treatment programmes.

There are two things we can’t do this without: collaboration and data-driven approaches. Together these make a powerful relationship that will be able to help millions of people worldwide, not just in the fight to understand and improve outcomes for long Covid patients, but in many other areas of research too.