“Clinicum is the coffee room of KI!”
Thomas Frisell is a Principal researcher and docent in epidemiology at the Department of Medicine, Solna, and coordinates health data counseling in Clinicum. As a method-oriented epidemiologist, he is particularly focused on study design, biostatistics and how we can best use registries and other health data sources for clinical and epidemiological research.
Hi Thomas! Why are you part of the Clinicum advisory network?
When I was a new PhD student and about to do my first study on Swedish registry data, the coffee room was the best source of information. Although there was (limited!) documentation online, it was from my colleagues that I learned how the registries actually worked, and the history behind them. Good advice and important warnings from others who had gone through the same process.
Clinicum is the entire KI's coffee room! There are lots of data sources that could be used for research in different ways, even if they were created for a different purpose. We connect those who are considering to try out a new data source with others who have already gone through the process and used similar data in their own research projects. The idea is that by sharing our experience, as a sounding board in informal meetings or in feedback on application documents, we can boost each other's research with small means. It feels both fun and important!
What does a health data expert actually do?
We who focus on health data issues in Clinicum are not experts in the same way that an expert in biostatistics may be trained in certain methods. Instead, we have engaged people who have broad experience from requesting and working with different types of health data, and who are prepared to set aside some of their time to become even better, read up on legislation and try to keep up with developments in the field. Alongside consultancy, we organize seminars, often on topics where we want to learn more ourselves!
What kind of health data questions do people ask you about?
Anything that has to do with identifying where the information you would like to research might be stored, how you would request it for research, and how best to use it in specific studies. We do not own any data, but share experiences and explain practices and processes. Legal issues are often important, and here too we share experiences and success stories, but then refer to lawyers and individual data owners if necessary.
How can I best prepare for a consultation with you?
You are more than welcome to come relatively unprepared to brainstorm about where to find data for your particular project! The more clearly you can describe the type of data, or point to a particular registry, the easier it will be to connect you to the right expert. Later in the process, written feedback on documents, ethics applications and so on is often useful, but a first meeting can be quite informal.
Thomas Frisell's top Clinicum tips:
- Use Clinicum as your coffee room: an informal space to benefit from your fellow researchers’ expertise.
- You can come to health data advisors relatively unprepared - but it's good if you can describe what kind of data you need so we can connect you to the right expert.
- Those of us who work with health data often have a good grasp of the legalities of practices and processes, and can refer you to lawyers if necessary.