“Good data management builds trust”

“During the covid pandemic, researchers in the UK had access to health care data faster than researchers here in the Netherlands. This led to quicker findings and publications, and overall benefitted the treatment of all covid patients in Europe”, Julia Lischke states. “The main reason: they had a better developed data sharing strategy embedded in their health care system. The covid pandemic made it very clear there was a lack of harmonization and sharing opportunities of data in the Netherlands. But it also created the opportunity to improve the data infrastructure to the realization that we could actually use it for the benefit of patients.” 

Freeing the flow of data

This story Julia shares is an example of why good data management is essential in any health care system or research program. She is Data Management and Governance Coordinator at Oncode Accelerator, and as such responsible for guiding the decision-making process around result and data sharing. Julia: “This includes data infrastructure, agreements, security and data harmonization. All striving to free the flow of data in the program, without compromising privacy and compliance.”

The fact that Julia shares the covid story is no coincidence. As part of the Health-RI team she managed the establishment of the Dutch COVID Portal and initiated the connection to the European COVID Data Portal, giving her a unique perspective on the data challenges during the covid pandemic. She acquired a robust foundation in both biological and engineering sciences at the University of Stuttgart (Germany) and Chalmers University Gothenburg (Sweden). This academic fusion propelled her toward the dynamic field of data science, setting the stage for her contributions in data infrastructure projects for medical research at Lygature. 

Massive challenge

“Data management is a very important topic within any research consortium, and especially for Oncode Accelerator it is a top priority”, Julia continues. “In the program, over 30 public and private partners must work together and share data within and between 10 different consortia. This will be a massive challenge if you don’t set the rules right from the start.”

A well-defined data management plan (DMP) helps researchers prepare for data handling processes and gives them the freedom to focus on their analysis without worrying about reusability later. Julia gives some examples of questions that need to be addressed early on: “What information can we share? Through which channels? Who want to reuse the data and should they be allowed to?” Thinking through these questions before actually starting to produce data helps researchers prepare for data management activities, she states. “It helps them structure the way they think about and work with data. The real value of a robust data management system is its ability to streamline processes, enable reuse of data, foster a culture of transparent communication, and ultimately build trust among the stakeholders that work together within a project.”

Adding value 

Julia stresses on understanding the needs of the researchers first: “We have to make sure the data management benefits the researchers. Rather than setting up rigid structures or burdensome protocols, we will create a helpful tool together.” She thinks all researchers understand the need of a data management plan, but to put it in practice is not always so straight forward. “My role as Data Management Coordinator within Oncode Accelerator is to help set up the data management strategy, harmonize data management across the various consortia, and facilitate communication between the different consortia. By ensuring that consortia manage their data efficiently and safe, I act as a bridge, connecting various data strategies, and creating a streamlined, efficient flow.”

Ensuring privacy 

Data  protection and privacy, especially patient data and intellectual property, is paramount within Oncode Accelerator. The program implements highest standards for data sharing to ensure adherence to GDPR principles. Granting access only to authorized personnel and preventing unauthorized data extraction or sharing is the way to make sure the data is used safely. 

Julia concludes: “In this era of complex information and data layers, the diligent management of data is really the start of any research project. Oncode Accelerator, with its clear emphasis on data management, is setting the stage for efficient, transparent, and innovative research collaborations. Our approach showcases the harmony of structure, strategy, and flexibility in the world of data.”