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Collaboration with UK health data paves way for investigation of long Covid symptoms

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

As research teams around the world quickly looked for ways to collaborate and share information on Covid-19, the importance of data in understanding viruses, diseases and other issues affecting people’s health and well-being was escalated spotlight.

This complex, collaborative work enabled our colleagues to develop effective vaccines in record time, giving people the confidence to attend major events like the Commonwealth Games in Birmingham. But as crowds filled the stands and athletes headed out to track and field last week, health experts also gathered at UK House: The Commonwealth Business Hub to discuss the potential for data-driven healthcare. Organized by the 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 health inequalities.

One area of ​​particular urgency is our understanding of the ongoing impact of Covid-19, which continues to impact the everyday lives of millions of people around the world.

There are currently more than 200 symptoms associated with a long covid that can continue to affect people months after the original coronavirus infection has cleared. These can affect many organs in the body and include shortness of breath, 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 methods of measuring these symptoms as 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 Center for Patient-Reported Outcomes Research has developed the Symptom Burden Questionnaire™ (SBQ™) for long Covid. Patients can use it to report symptoms and the data can be used to identify treatments and test whether they are safe and effective.

The study was conducted in collaboration with digital health platform specialists Aparito Ltd and funded by the National Institute for Health Research and UK Research and Innovation. This tripartite collaboration between academic, public and commercial organizations is a prime example of why the UK, and the West Midlands in particular, offers fertile ground for innovation in digital healthcare.

The tool was developed with patients who have long experience with Covid so that it can capture symptoms and their impact on everyday life.

Sarah Hughes
Sarah Hughes, PhD, Research Fellow at the University of Birmingham

Centralizing the study was not feasible due to the commitments patients would need to make and the requirement for frequent responses to the study SBQ™, so Aparito delivered the SBQ™ via the ePRO module of its Atom5™ app to ensure important support and Provide information empowering patients to self-report long Covid symptoms.

To manage ongoing patient consent, Aparito deployed an eConsent module to provide a compliant solution through Aparito’s partnership with American technology company DocuSign.

The team worked closely with national UK long-Covid support groups at every stage of the app’s development to ensure its acceptance, ease of use and relevance to patients. This approach empowered the University of Birmingham and Aparito to design and develop an innovative new approach to monitoring long Covid symptoms with potential benefits for monitoring.

Life Science Research in Birmingham

That this study came from Birmingham is no surprise.

The West Midlands region is positioned to leverage world-leading academic and clinical strengths in data, digital, diagnostics, devices and clinical trials. These strengths bring the region commercial power to develop research and accelerate time-to-market by taking innovative patient-centric healthcare solutions from early development to real-life application, driven by unrivaled access to actionable healthcare data.

The £10.3bn full-service healthcare and life sciences economy includes a £1.7bn medical technology sector and a £4bn biopharma services and utilities sector (the second largest in the UK). It is supported by over 24,000 professionals working in the healthcare, biopharma and medical device sectors, making the region a thriving center for the design, development and delivery of healthcare innovation.

This ecosystem has been designated as a Life Sciences Opportunity Zone by both the UK Office of Life Sciences and a High Potential Opportunity in Data-Driven Healthcare by the Department for International Trade.

Birmingham Health Partners (BHP), a collaboration between the Universities of Birmingham and Aston and NHS Trusts, serves a diverse and stable patient population of nearly six million. With eight hospitals and 35 clinical research centres, it hosts one in five of all clinical trials in the UK.

This provides the academic and clinical excellence to bring about a game changer in precision healthcare, addressing health inequalities and delivering meaningful benefit to patients in the Region, the UK and around the world.

Sarah Hughes, PhD, is a Research Associate at the University of Birmingham’s Institute of Applied Health Research

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