UK health data collaboration paves the way to study Long Covid symptoms

If the last two years have taught us anything, it’s that healthcare challenges transcend nations. 

As research teams across the world rapidly sought ways to collaborate and share information on Covid-19, a spotlight was shone on the importance of data in understanding viruses, diseases and other issues that affect people’s health and wellbeing. 

This complex, cooperative work allowed our colleagues to develop effective vaccines in record time, giving people the confidence to attend large events such as the Commonwealth Games that took place in Birmingham. But as the crowds filled the stands and athletes take to track and field last week, healthcare professionals also gathered at UK House: The Commonwealth Business Hub, to discuss the potential for Data-Driven Healthcare. Organised by Department for International Trade (DIT) and West Midlands Growth Company, the event brokered new international partnerships in the sector that will improve patient outcomes and address global healthcare inequalities. 

An area of particular urgency is our understanding of the ongoing impact of Covid-19, which continues to impact the everyday lives of millions around the world. 
 
Currently, more than 200 symptoms are associated with Long Covid, which can affect people for months after the original coronavirus infection has gone. These can affect many organs in the body and include breathlessness, fatigue, or brain fog and are estimated to affect around 1.3 million people in the UK and more than 100 million people worldwide. 

Healthcare providers and researchers need reliable ways of measuring these symptoms as they are experienced by patients to help them develop new treatments and provide the best possible care.

In response to this challenge, a team from the University of Birmingham’s Centre for Patient-Reported Outcomes Research designed the Symptom Burden Questionnaire™ (SBQ™) for Long Covid. Patients can use it to report symptoms and the data can be used to help identify treatments, and test whether these are safe and effective. 

The study was carried out in partnership with digital health platform specialist, Aparito Ltd, and funded by the National Institute for Health Research and UK Research and Innovation. This tripart collaboration between academic, public and commercial organisations is a model example of why the UK, and the West Midlands, in particular, provide fertile ground for innovation in digital healthcare. 

The tool has been developed with patients that have lived experience of Long Covid, so it can capture symptoms and their impact on everyday life.

Centralising the study wasn’t feasible due to the commitment that patients would need to make and the requirement for frequent responses to the study’s SBQ™, so Aparito delivered the SBQ™ via their Atom5™ app’s ePRO module – to provide critical support and information to empower patients in self-reporting long Covid symptoms.

To manage ongoing patient consent, Aparito deployed an eConsent module to provide a regulatory-compliant solution via Aparito’s partnership with the American tech company DocuSign.  

The team worked closely with national UK Long Covid support groups at each stage of the app’s development to ensure its acceptability, usability, and relevance to patients. This approach empowered the University of Birmingham and Aparito to evolve and develop an innovative new approach to monitoring Long Covid symptoms, with potential benefits for the monitoring.