News & press releases

Developing a cancer risk profile based on combined health data sources

Date: July 06, 2022

A feasibility study led by Sciensano, and supported by HealthyCloud partners, EMBL-HD, BBMRI-ERIC, Euro-BioImaging, THL, UTARTU, reveals how health data gathered at the population level can help to develop high-risk profiling for major cancer risk factors. This study represents a first step toward a multi-country study that will combine various types of data to create an understanding of the interplay between genetics, lifestyle and environmental factors in the risk of developing cancer. Lessons learned and challenges for current health data management and collection are documented in this cancer use case, under the greater HealthyCloud project and provide key foundational information for advancing transferable systems, creating partnerships and fostering community capacity and participation.

The study describes the data required for examining whether there exists a relationship between polygenic risk scores (PRS) and a combination of modifiable lifestyle and environmental related risk factors that could inform a personalised cancer high- risk profile.

Belgian and Finnish national health data collections served as the focus of this feasibility study (data sources in Table1) and a database structure was developed to analyse the combined health data based on these health collections. The study explored and developed various statistical approaches and translated this combined information into cancer-risk questions. It then analysed the countries’ data sources and registrars to assess their quality and to recommend improvements.

Data sources analysed by country

Using real-word cases such as this one demonstrates the utility of linking health research data, clinical data and administrative data. Marc Van Den Bulcke, Head of Service of Sciensano´s Cancer Center views the initiative as an opportunity to understand that, “next to cigarettes, alcohol, muffins and sofas, genes are becoming our fifth risk factor” for developing cancer.

In addition to offering an overview of the data available in these two countries and their potential use within the greater HealthyCloud project, the study highlighted important challenges for data access and analysis and the transferability of these findings to other European countries. Belgium and Finland have centralised health data management systems that include data from the entire country. However, some European countries organize their health data differently (i.e., de-centralised). The use case thus helps highlight the need for a different approach for federal countries such as Spain or Germany, where health systems are not centralised.

Dr Mark Van Den Buckle

This study represents one of the two use cases of the HealthyCloud project, which seek to identify the functional requirements of two real-world research questions whose answers require linking health research data, clinical data and administrative data. It contributes to the project’s objective of providing recommendations, guidelines and best practices for accessing, using and reusing health data for better research outcomes across Europe

Read the complete report (D7.1 )