Helle Sorensen, Communications Officer
in conversation with
Dr. Anne Pernille Toft-Pedersen, visiting researcher at ICNARC
Why UK research stands out. Anne is a PhD student in clinical epidemiology and has a background as a junior doctor. She’s been researching full time for two years, and her study “Outcome for critical care admissions with burns” was presented at this year’s ICNARC conference. It is due to be published later this year.
I’m meeting Anne at an Italian café in Bloomsbury. The place is lively with lunching Londoners, and a suitable backdrop for Anne’s enthusiasm.
“The data I can access at ICNARC, the research that I can partake in here, is just so much closer to patients when compared to my experiences in Denmark”.
ICS: What is unique about intensive care research in the UK?
The main difference is in data collection. In Denmark, we have hitherto not collected data on physiological derangement on admission and little real-time data on procedures. In a sense, critical care units are “black boxes”. In a complex field, where the only common feature is that patients are critically ill, it is a serious limitation that we cannot adjust data for case-mix or reliably determine the timing of procedures.
But not here in the UK. ICNARC has a comprehensive and validated database. At the point of admission, a vast range of physiological data is collected which allow us to adjust for disease severity. Therefore, when we explore the importance of a factor for treatment outcome, we can “cancel out” the influence of other factors, such as the patient’s medical history or his reason for being in the critical care unit.
In Denmark, such cleansing of associations is not possible at the moment.. The picture is much less complete. It is a real treat for me, as an epidemiologist, to be so ‘close’ to the patients. Also, as I have no clinical background in critical care, it is of paramount importance for me to have access to the network of intensivists associated with ICNARC. I feel that strong link between nurses and intensivists “in the field” and researchers is a unique strength in the UK system.
ICS: Why was such a system put in place?
Setting up an organisation such as ICNARC and allowing researchers to work with the audit data has been the work of enthusiastic and visionary people. Ultimately, though, what must have been really ground-breaking at the time is engaging units across the country in development of the dataset as well as in validating the data. I think that the continuous dialogue between ICNARC and the units is the key to ensuring data of high quality.
Improving critical care is an ever moving target. The continuous revision of the items collected and the ICNARC model itself of course ensures that the model is up-to-date but also that units only have to collect information that is of importance. I suppose that one of the reasons why it has been possible to keep the enthusiasm of the units is that ICNARC appreciates the time and effort staff put into data collection.
Sometimes, research can feel a long way away from patients. I really like that the ICNARC data are not solely collected for research but are also used for direct improvement of patient management. Units are provided with quarterly reports which benchmark the performance of the units to that of other units with similar patients.
ICS: What can the UK system learn from the Danish system?
In Denmark, every citizen has a unique personal identifier, which is used in all public registers. The CPR numbers enable us to unambiguously link hospital records, redeemed prescriptions and demographic data. . We can literally trace patients from the cradle to the grave but of course in a strictly anonymized manner. This allows us to follow the critical care patient from before he ended up in critical care, through his hospital stay and for decades beyond discharge. We can also examine outcomes other than death, such as ability to live independently.
This is not possible in the UK. I guess it stems from your unwillingness to be monitored too closely. I think ICNARC and others looking at data linkage will be able to somewhat bridge this gap and this will really widen the range of possible studies.
ICS: What’s next for you?
Well, I have a number of ongoing studies but come Christmas I have to return home to defend my PhD thesis. The UK experience will continue to influence my research in the years to come. I will stay in contact with ICNARC, but I also think that I bring with me an improved understanding of Danish patients and of research as a discipline. This is teamwork! Having worked with professional and experienced statisticians, epidemiologists and even psychologists has taught me an invaluable lesson on the importance of diversity. It has been a huge experience to learn from them – and to learn that even though I can never match their expert knowledge within their fields, collaboration will still allow me to do valuable research.
About Anne’s work: Anne’s first project with ICNARC has been an epidemiological description of patients admitted to adult general ICU with burns. In connection with this, they compared different prediction models to establish which is the more precise model in this particular setting. They are still in the processs of writing up the paper, but Anne hope it will come out later this year. Also, she’s engaged in projects focusing on COPD and ICU management. The intention is not to put anyone to shame, but rather to shed light on clinical practice and the quarterly report can help units identify suboptimal care and ways to improve practice. They used to say that forensic medicine is an opportunity for “the deceased to help the living” and Anne thinks that the audits allow the very ill to help each other.