Project perspectives II: interview with Kari Kuulasmaa
Kari Kuulasmaa, PhD in mathematics, is the Head of the Data Centre (1998-) and Coordinator (2013-) of the MORGAM Project at the Finnish Institute for Health and Welfare in Helsinki, Finland. He was also the Head of the Data Centre of the WHO MONICA Project, the world’s largest study of heart disease, stroke, risk factors, and population trends in 1987-2003. In euCanSHare, he is the lead responsible for the implementation of the euCanSHare data catalogue and cohort browser.
What is the euCanSHare data catalogue? The euCanSHare data catalogue is a collection of descriptions of studies on cardiovascular diseases. It is organised in a way that researchers can easily find out what kind of studies have already been conducted and what data are available for research purposes.
Why is euCanSHare’ s data catalogue significant for increased efficiency in cardiovascular data-driven research? By providing a full overview of the latest and former research studies, together with information about the availability of data, the euCanSHare data catalogue helps researchers, who are planning to conduct a study or an analysis, to fully exploit the potential of available data and to answer new research questions. Therefore, the project data catalogue makes use of existing data more efficient, improving cardiovascular data-driven research.
How can it contribute to improving citizens’ life? euCanSHare will contribute to the improvement of citizens’ life by accelerating data-driven research studies that will lead to new knowledge and treatments. Research studies are fundamental to improve our understanding of risk factors and lifestyle issues that might lead to cardiovascular diseases, to identify new biomarkers and to find better treatments for the benefit of the citizens and patients. A clear overview of the risk factors across different populations in various countries can support policymakers in building prevention policies, can alert clinicians if preventive treatment is needed and can also help citizens to improve/ prolong their life by adopting healthier habits. Clinical trials and data-driven research studies on the efficiency and effectiveness of treatments may also be included in the euCanSHare data catalogue at a later stage, providing a complete and exhaustive map of the existing information and available data in cardiovascular research.
Which information contains the euCanSHare data catalogue? The euCanSHare data catalogue describes different individual studies, giving information on their objectives, the researchers who conducted the research, the timeline, the size, the type of data, the study design, the study setting, details on the variables that are available and the individual level availability of data on these variables. Networks of studies are also reported in the catalogue. Besides that, the data catalogue outlines harmonisation studies for joint data analysis. Moreover, the catalogue includes information on the data access procedures, which vary from study to study according to data protection regulations at the local, regional, national or supranational level and according to funders’ data sharing policies. Researchers will be able to search and rapidly obtain information on the available data thanks to a user-friendly research tool and hopefully will be able to request for data access via a shopping basket tool which is currently under development.
Can you explain how euCanSHare differs from major data sources (e.g., MORGAM, BiomarCaRE, CAHHM, WHO MONICA, UK Biobank)? And how is euCanSHare integrating data from these initiatives? MORGAM, BiomarCaRE, CAHHM, WHO MONICA are consortia of individual studies that have already harmonised their data together; UK Biobank (UKVV) is an individual large cohort study which recruited around half a million people specifically for research purposes. All these studies aim to improve the prevention, diagnosis and treatment of serious and life-threatening illnesses. euCanSHare differs from these initiatives. Instead of directly studying health-related issues, it aims to develop a cross-border data sharing and multi-cohort cardiovascular research platform. The euCanSHare project is building the infrastructure where the above-cited studies and other cardiovascular research initiatives can make their data more findable and accessible. Furthermore, it offers tools and services (such as the data catalogue) to facilitate information on data availability, data integration, data harmonisation, data access and analysis. In particular, the euCanSHare data catalogue is a discovery tool for cardiovascular research data. It contains multi-level information about heart-related studies aggregating data from cohort-based studies with omics and bioimaging data repositories and it facilitates harmonising, integrating and comparing these large data sets.
What is the added value of data sharing for healthcare? Why should cohort studies share their data with euCanSHare? A single research group can seldom fully exploit the potential of its data set. Furthermore, single studies, even if they recruit thousands of people for research purposes, are too small to address many relevant research questions. Large data sets and many scientists with different expertise are needed to answer complex research questions. Data sharing is a way to bring more experts together to conduct research on multiple data sets, accelerating the research process and pursuing the sustainability of healthcare systems. Cohort studies might be interested in enlarging their network for collaborative research, in increasing the visibility of their cohorts, in expanding the sample study size and the population groups, in using data, tools and services already available saving resources and money. All these are good reasons to join our initiative and share data via the euCanSHare platform.
What is the main challenge you are currently facing in building the catalogue? The data catalogue we have created is based on the good Obiba tools Mica and Opal. Since December 2018, the euCanSHare consortium has worked hard to learn how best to build it, and how to structure the different study designs into the system. Now we are finetuning the user interface to make all the available information clear to the user.
Have you changed the way you work over the years? If so, how? I would say that the biggest changes are related to communication. Firstly, in the late 1980s, the electronic mail came and changed the communication completely since before most of the communication was being done via post. Secondly, the worldwide web radically transformed the way we work. Suddenly all collaborators in different countries could easily find up-to-date information on the web. Now, due to Covid-19, we are experiencing to work from home. Data management and data analysis also changed. In the 1980s, data were transferred first via electromagnetic tapes, then via floppy disks. Furthermore, the methods and tools for data analysis have significantly improved over the years.
What else would you like to share with the reader? I would like to conclude this interview with a message to policymakers and funding institutions. Although progress has been made with data sharing and harmonization over the past years, there have been many projects which have created valuable harmonized data resources which have vanished after the initial funding period. We need to ensure that what has been created will not disappear. The good infrastructures and data resources, which are developed, should survive, should be used, and improved by various stakeholders. Also, I invite everybody (researchers, clinicians and technologists, companies, SMEs in cardiovascular research) to contribute to the euCanSHare Platform.
About data-sharing initiatives in cardiology
- MORGAM (MOnica Risk, Genetics, Archiving and Monograph) is a multinational collaborative study based on the harmonization of data from population-based cohort studies.
- BiomarCaRE (The Biomarker for Cardiovascular Risk Assessment across Europe) is a project aiming to determine the value of established and emerging biomarkers to improve risk estimation of cardiovascular disease in Europe.
- CAHHM (The Canadian Alliance for Healthy Hearts and Minds) is a landmark national research study aimed at understanding the causes and the development of chronic diseases such as heart disease, stroke, dementia and cancer.
- WHO MONICA (Multinational MONItoring of trends and determinants in CArdiovascular disease) was established in the early 1980s in many Centres around the world to monitor trends in cardiovascular diseases, and to relate these to risk factor changes in the population over a ten year period. It was set up to explain the diverse trends in cardiovascular disease mortality which were observed from the 1970s onwards.