Clinical research needs to pay more attention to the fact that human beings are complex
Ulrika Sandén is an author and researcher in innovation technology at the Faculty of Engineering (LTH), Lund University. Through of her own experiences of illness and a comprehensive rehabilitation journey, she is now working on various research projects together with public agencies, healthcare personnel, and patient and healthcare organisations to improve and develop the cancer care of the future.
Ulrika Sandén started her doctoral studies at the Faculty of Engineering (LTH), Lund University, in 2016. But, in truth, her research career started much earlier.
– I had surgery for a brain tumour in 2004, and I often say that my research work started already during my rehabilitation. I lost some cognitive ability after the operation, and together with the healthcare personnel, I fought to find functioning strategies and ways forward.
We are meeting at the Ingvar Kamprad Design Centre at LTH. Ulrika Sandén leads the way to her office, creatively cluttered with photographs, books and reports. She is in the middle of her thesis work, which concerns finding out what is important for cancer patients, so that the research of the future can be adapted to and aimed at the needs that exist.
– There is a lot of research that indicates large improvement areas in terms of innovation, coordination, collaboration, logic, support of close relatives, and information.
The banana ruler
Ulrika Sandén regularly gives lectures about her research, but also about the long journey from receiving the diagnosis of a serious illness and losing your way in the healthcare labyrinth to being accepted as a doctoral student at Lund University in 2016.
Ulrika Sandén believes that she would not be alive today if she had not been active in her own care when she suffered a serious brain tumour in 2003. The years that followed were lined with innumerable investigations and meetings with healthcare, but also with subsequent illness. Just over ten years after having had her brain tumour, she became ill with secondary Parkinson’s disease, and three years ago suffered a stroke.
– The cognitive rehabilitation was fantastically good. I met healthcare personnel who were secure and knew what they were doing. Swedish healthcare can be so good when personnel and patients cooperate and have time to think. But at the same time, it has been a tough journey.
Using a ‘banana ruler’, developed by the design student Joel Elinder, Ulrika Sandén wants to challenge ways of thinking, norms and truths. She thinks that the banana ruler works as a symbol showing that while knowledge is dynamic and human beings are unique, in healthcare patients are often regarded as straight rulers.
– But people aren’t straight rulers, we are complex, curved and unique, and have different needs and expectations. If every patient was regarded as the curved rulers they are, and healthcare was adapted accordingly, and if the personnel were also allowed to use their unique abilities in the patient encounter, then health and medical care would be quite different.
The banana ruler is applicable also to research, not least clinical research, Ulrika considers.
– With the banana ruler, I want to challenge the creativity of researchers, and ask questions such as: what are we measuring, for whom, and using which measuring stick?
If she had the chance of strengthening clinical research in Sweden, she would like to inject more freedom of thought and curiosity in the research system.
– I would like patients to be included for real. Patients are an under-used resource in research. But for people to want and have the strength to take part in more than controlled reference groups, healthcare needs to become better at strengthening people. Currently, many feel flattened by having been distrusted and belittled during the healthcare process.
Help to help yourself
Ulrika Sandén, who has considerable experience herself of being a patient and falling between chairs due to organisational firewalls and financial silo systems, has thought a lot about how as a patient you can handle the vulnerability, the waiting, the worry, the fear and the difficulties.
In her report “På okänt cancervatten” (2016), she has used earlier studies and reports as the starting point, and has also interviewed cancer patients individually and in groups.
– The aim was to try to understand and find patterns in how they handle their life situations. Different individuals use differing techniques to handle worry. In the search for strength and joy of living, they combine both conscious and unconscious strategies. There is a lot to learn from this.
In her thesis, she is working on how to utilise patients’ experiences, knowledge and competences, and to design different forms of cooperation, where the focus is on the needs of the individual and also of their close relatives.
– The issues we work with are, for example, how we can create prerequisites for patients to help each other. Many of those who suffer from cancer want to share their experiences and knowledge, but aren’t quite sure how to. Health and medical care need to see them as a resource with unique knowledge.
Another one is how to get away from the fragmentation of healthcare and create solutions for continuity and cooperation throughout the healthcare chain, from the first contact with healthcare, via the investigation and treatment, to any after-care and rehabilitation.
– Encounters in healthcare are often patient-centred in a fragmented way. Even if the individual encounter is focused on the patient, the overall effect is still lost when the healthcare chain does not link up.
Testbed for cancer patients
Ulrika Sandén tells us about Lydiagården in Höör in Skåne. Here, the research team is operating a testbed for patients undergoing cancer rehabilitation.
– Together with our patients, we have begun work on developing a digital portal that will make it easier for patients to communicate with each other and with healthcare, and also with public agencies, such as the Swedish Social Insurance Agency and the Swedish Public Employment Service. We are also developing various services based on patients needs, to be linked to the digital portal.
– Fundamentally, it is about finding solutions together to make life simpler and easier for cancer patients.
At Lydiagården, the research team also uses technology such as VR (virtual reality) and AR (augmented reality).
– These are truly at the research stage, but the idea is to enable patients to jointly combine feelings of community and joy, but also to give an outlet for feelings of frustration, sorrow and despair.
The idea is to reinforce the inherent ability and strength that exists in patients. The long-term goal, Ulrika Sandén thinks, it for this strength to hopefully lead to a change in healthcare organisation and attitudes.
She is currently working 50 per cent as a researcher, and receives 50 per cent sick pay.
– I feel well today, but need a lot of time to recharge, and work fairly irregular hours to use time to the best effect. I usually wake up early, and work most effectively during the morning hours.
Ulrika Sandén, who expects to complete her doctoral degree in 2022, is also the author of “Nuets förnöjsamhet”. The book was published last spring, with a foreword by Bodil Jönsson, author and professor of rehabilitation technology, and is based on grounded theory about life choices and survival strategies.
– Nuets förnöjsamhet is about attitudes and how you can look at life. I hope that people who read the book experience some good laughs, and adopt those bits that feel important and suited to them. I don’t believe that ‘one size fits all’.