Ida Blystad and her colleagues examine the brain using MRI. Photo credit Emma Busk Winquist It’s the year 2020 and the COVID-19 pandemic is a fact. Richard Levi works in rehabilitation medicine, but when medical care is quickly reconfigured, he becomes involved in the care of COVID patients.Richard Levi, adjunct professor and consultant. Photo credit Charlotte Perhammar
“A few weeks into the pandemic, the intensive care and infectious disease doctors started to warn that patients who had been acutely ill didn’t recover in the way normally expected. After acute illness or ventilator care, patients usually start to recover quite quickly. But after COVID-19, there were persistent problems in the form of confusion, strange behaviour and cognitive difficulties,” says Richard Levi, adjunct professor of Rehabilitation Medicine at LiU and consultant at Linköping University Hospital.
Problems difficult to explain
Many COVID patients were examined using different imaging techniques at the Radiology Clinic.
“We examined them at the acute illness stage. The health care sector sought an explanation as to why they had these types of symptoms that were previously unseen, especially in the intensive care sector,” says Ida Blystad, neuroradiologist at Linköping University Hospital and researcher at Linköping University.Kristin Zeiler, professor, and Ida Blystad, neuroradiologist and researcher. Photo credit Emma Busk Winquist
For researcher Kristin Zeiler, who works in the medical humanities, the pandemic meant that many ethical and philosophical questions became highly topical.
“I and many others have worked with interdisciplinary medical humanities for a long time, often in combinations of humanistic and social science perspectives on health, disease and healthcare, and in dialogue with healthcare professionals. But the pandemic and the realisation that some people still have symptoms long after the infection itself speeded up the discussions that we had about the need for interdisciplinary research that brings together perspectives and methods from genuinely different science disciplines. It becomes very clear that such research is required for post-COVID symptoms as a health challenge to be understood in a nuanced and adequate way,” says Kristin Zeiler.
This resulted in an interdisciplinary research project, with funding from the Swedish Research Council. Today, the research project core group consists of twenty researchers from different research disciplines.
“We work across the humanities, social sciences, clinical practice and biomedicine, in ways that are still unusual,” says Kristin Zeiler, who leads the project.
Two studies in one
The width of the project is reflected in its name: “Biomedicine, clinical knowledge and humanities in interaction: A new epistemology for radically interdisciplinary health research and policy work in the case of post-COVID-19.” Epistemology is another word for the theory of knowledge, or the doctrine of knowledge.
“In my world there are two study subjects in the project. One is post-COVID. The other one is on a meta level and deals with challenges and opportunities in radically interdisciplinary research. You could say that the project itself is a research subject,” says Richard Levi.
In other words, they are researching how interdisciplinary knowledge production can be done. Research on how knowledge is made is central in some humanistic and social science perspectives.
“We want the research to lead to new knowledge and insights that can contribute to good care for patients. In addition, the aim of the project is to develop new interdisciplinary perspectives and methods. The project investigates basic prerequisites for interdisciplinary research. What opportunities and difficulties does the kind of combination of perspectives and methods that we work with in the project present? Medical humanities and biomedical perspectives are often based on different scientific theories and if we don’t talk about them, if we don’t examine tensions between different perspectives as well as analytical insights when we start combining them, we won’t understand what this kind of interdisciplinary research can actually entail. The overarching issues must be with us all the time throughout the project,” says Kristin Zeiler.
Severe fatigue in focus
The interdisciplinary project consists of five sub-studies. The collaboration between Richard Levi, Ida Blystad and Kristin Zeiler is part of study two, which focuses on the severe fatigue that is a common post-COVID symptom.The MRI scans were performed at the Center for Medical Image Science and Visualization in Linköping. Photo credit Magnus Johansson
In their sub-study, the researchers conduct clinical investigations, neuropsychological tests, MRI scans of brain function and analyses of a type of signal substances from the immune system. These are combined with a part where in-depth interviews with sufferers about their own experiences of post-COVID severe fatigue as a phenomenon are analysed from a combined qualitative and philosophical perspective.
Demanding and rewarding
“We researchers in the collaboration have different backgrounds in terms of research methodology. We ask different questions. I learn a lot when I hear how people in other disciplines think and what is important there. Doing research in this way is inspiring and challenging at the same time,” says Ida Blystad.
When different methods have different needs, the researchers must agree. How many patients are needed in the study for it to work for all methods? The clinical researchers need many patients in the analyses and also healthy people who can be used as a control group. In contrast to this, the medical humanities use qualitative interviews. The number of interviews needed is far fewer, since there is a saturation and no new angles on the theme will arise even if the number of interviewees is increased.
Kristin Zeiler believes that the interdisciplinary approach, in which the researchers bring together different perspectives and have a dialogue between different disciplines, requires a lot from everyone involved. At the same time, it is extremely important to be able to understand post-COVID syndrome better.
“It’s an ongoing process where we need to find a common language at a fundamental level to understand each other’s perspectives. Everyone contributes with their specialist knowledge, but we must also be able to have interdisciplinary conversations. What is your perspective? What issues are important to you and what kind of knowledge is created based on the methods you use? It’s demanding, but it’s really exciting and stimulating,” says Kristin Zeiler.
Richard Levi hopes that interdisciplinary research will become more common. He believes that post-COVID syndrome in principle makes it necessary to develop such a methodology:
“A genuine understanding of complex conditions requires an analysis from several perspectives. And this applies not only to post-COVID syndrome. There’s also exhaustion disorder, fibromyalgia and chronic fatigue syndrome. Hundreds of thousands of people are on long-term sick leave and we can’t currently explain in a satisfactory way why they aren’t feeling well. This puts the spotlight on a social problem that I believe is best addressed in an interdisciplinary manner.”
Photo credit Emma Busk Winquist