From respiratory research to long covid pathways: Dr Mark Faghy, Associate Professor in Respiratory Physiology at the University of Derby, is currently leading a pioneering international study to improve the lives of people suffering with the prolonged and life impairing impacts of long-Covid. Here he discusses the journey that led his team from research in occupational physiology and the possible benefits to respiratory patients, to informing the support and treatments that would improve recovery for patients post pandemic, and acknowledges the healthcare workers and scientists that informed the research along the way.
During the closing stages of my PhD, I was introduced to a consultant at the Royal Derby and Burton Hospital via a colleague at the University who saw similarities in my research in occupational physiology and the possible benefits to respiratory patients. What started as an initial introduction over coffee (of course), turned into regular meetings and dialogue about how strengthening the breathing muscles might be advantageous during recovery from community-acquired pneumonia. Before I knew it, I was pitching the idea to a fully established research team across the Midlands with some highly regarded names in the area and imposter syndrome doesn’t come close to how I felt in the lead up to that presentation. I didn’t need to worry though as it was well-received, and they saw the logic in what I said. PHEW. It didn’t translate into developed and implemented projects straight away but what it did highlight was the need to better understand recovery and to look at multidisciplinary opportunities to increase the benefit for patients. Over a few years we established a series of projects that sought to better understand the profile of recovery and characterise the prolonged symptom profile that occurs in the weeks and months following a pneumonia. Fast forward to January 2020, and we have completed several projects and were discussing the next steps when the clinical staff began preparing for the impending arrival of Covid-19. As a researcher who has formed some great collaborative relationships and friendships within the healthcare sector, it was hard to watch from home, seeing and hearing of the challenges that colleagues were facing. I was in regular contact with them via e-mail and phone, offering any support I could to help. Then on a Wednesday night in the middle of April, I distinctly remember a telephone conversation with Tom, an acute respiratory infections consultant at Royal Derby and Burton Hospital Trust who highlighted some similarities in the prolonged symptom profile of pneumonia patients and patients with COVID-19.He highlighted that patients were coming back to the hospital after treatment for Covid-19 needing support and that there was a lot of uncertainty around the cause and impact of the issues. We discussed at length how we could reposition the research that we had previously conducted to obtain a better understanding. In the days and weeks that followed I was busy developing applications that could be submitted to the National Institute of Health Research Covid Rapid Response funding call. We submitted this in May 2020, proposing longitudinal investigations to better understand the trajectory of Covid-19 recovery to inform the support and treatments that would improve recovery for patients. We were unsuccessful in this application but shortly after noticed a funding call from Gilead Sciences and we quickly completed the application and were successful in securing £185k from them in January 2021.
As we were establishing the contracts, logistics and relevant approvals for the research, the narrative around long-Covid was gaining momentum nationally and internationally and we knew that our research would be an important part of informing the global response. I discussed with Dr Ruth Ashton, Lecturer in Exercise Physiology at the University of Derby, about the importance of the lived experience and we made a joint decision to include a patient diary. This would allow patients the opportunity to record their experience of living with Covid-19 and this might turn out to be a really important inclusion given the broad challenges that patients are experiencing and how widely this has been covered in the media. Ruth and I are very much on the same page about most things and this provided a great basis to develop a strong research team, which has increased massively in the months since we launched this and other projects. While the procedural part of our research was still ongoing, a Masters (now PhD) student of mine and Ruth’s launched a survey investigating the pre-Covid-19 physical activity status and the impact this had on patients’ outcomes, which introduced us to Lindsay Skipper, a musculoskeletal and obstetric and physiotherapist and a long-Covid patient from Sussex, who had previously lived and worked in Derby. In our discussions with Lindsay, it became very apparent that the lived experience and patient voice were going to be central to unravelling this complex picture but the opportunity to raise her concerns was muted at several junctions. As a result, we worked closely with Lindsay and her impressive network to develop a survey that captured the lived experience of Covid-19 and also long-Covid.The survey was launched in autumn 2021 and received almost 200 responses, but more importantly, provided us with hundreds of pages of data that articulated the complex and often unique challenges that patients are facing. What is most evident is that long-Covid patients feel ignored and disregarded in healthcare settings and that they need a bespoke screening process and support pathway that will address their issues – because, despite some suggestions, no single approach will resolve long-Covid.
As we continue to develop our understanding and consolidate the data we are collecting as part of our active research projects, we have worked hard to establish an international network of clinicians, patients, healthcare workers and scientists that share a consensus of needing to understand the issues entirely to develop the most effective support mechanisms. This will likely take some time, but Covid-19 and long-Covid continue to present us with an unprecedented, multi-system complex picture that will need bespoke support pathways. These will need to consist of clinical and non-clinical collaborations, bespoke screening tools and address each patient as an individual (I call this the buffet approach, where you get what you need when you need it).
As we surpass the second anniversary of the first UK lockdown, we continue to work tirelessly to increase the understanding via active projects, but also in the formulation of a stakeholder group who will be actively involved in the development and implementation of long-Covid support service in months ahead (I wish it was now).
Acknowledging that this week is healthcare science week, we as a research group would like to thank all healthcare workers and scientists for their continued and tireless work over the past few years. We are still faced with longstanding issues and the pandemic is not over, but your continued efforts are inspirational and TOGETHER, we will find a way to support the patients we serve.