New professor wants to improve international access to medical data for research

10 June 2021• PRESSRELEASE

Digital medical data are not equally available worldwide. Europe and the United States, for example, possess a great deal of data, while African countries have little access to medical data. Professor Mirjam van Reisen pleads for international access to data for research so more countries can benefit from it. She wants to achieve this through FAIR data. By developing digital health applications, Van Reisen wants to broaden the accessibility to quality care in Africa. Since the 1st of January, Van Reisen has been appointed as professor of FAIR Data Science at the Leiden University Medical Center (LUMC). The chair was endowed by Philips and Kampala International University.

Van Reisen recently transferred from the Leiden Institute of Advanced Computer Science (LIACS) to Leiden University Center for Infectious Diseases (LU-CID) at the LUMC. As a professor, she wants to close the gap between medical research and the accessibility of data in order to broaden the access to appropriate care. "To do research, you have to know what the most important issues are in practice. Only then can we create a context in which data acquires meaning. At the LUMC, research and patient care meet. Because of this connection, we can match current issues with informed answers," she says. 

"The most important ingredient of research are data," continues Van Reisen. "The amount of data has grown exponentially over the past decade and nowadays nearly all data are digital." According to Van Reisen, the current corona pandemic underlines the importance of data. "Data have been crucial in developing vaccines but also essential for a better understanding of the disease." However, a major problem with digital data is that data are not equally available worldwide. Van Reisen wants to change this. 

Accesible data

To enable global access to medical data for scientific research, data have to meet certain requirements. "Data need to be FAIR, which means they should be Findable, Accessible, Interoperable and Reusable", Van Reisen explains. This entails, among other things, the ability of computers to recognise and process data and that data should remain in its place of origin. "We have seen data from African countries being extracted by other parties. For example, the government of Liberia does not own any data on the Ebola epidemic in 2014. In this way, data does not benefit the people it actually concerns." 

Learning from each other

The corona pandemic offered Van Reisen and colleagues the perfect opportunity to put their FAIR protocol into practice. For this purpose, Virus Outbreak Data Network (VODAN) was established. LUMC is one of the initiators of this project. In the past year, Leiden researchers have invested a great deal of effort in setting up networks with other countries within VODAN. In Africa alone, 70 clinics in 9 countries are connected.  

Because of her extensive experience and long-term collaborations with African researchers, Van Reisen plays an essential role in this. "We are now implementing the protocol in a number of African countries. We focus for now on the FAIR processing and storage of data from the WHO-CRF form and patient data of clinics and hospitals. In this way, data on COVID-19 cases are systematically collected, directly at the source."  

Ultimately, Van Reisen hopes that medical data can be consulted by researchers worldwide via FAIR data stations. "This will allow researchers to consult data from other countries and learn from each other in a crisis situation." 

Transformation in the research community

But that is not the only advantage, Van Reisen believes. "Researchers can access relevant data for their research question via a network of FAIR data stations," says Van Reisen. The European GDPR, in which data ownership by the patient is central, serves as the starting point. The data is processed in accordance with the European data protection standard and the legal framework in the involved countries. "This means that data sets remain in the countries and hospitals themselves. As a result, researchers have to handle data differently. After permission has been granted, data can be accessed online. This prevents sending large files, the ownership remains in the country of origin, the patient data remain in the hospital, and the researcher retains the context of the data." 

Van Reisen thinks that this type of data consultation will change medical research in the near future: "research data will be much more diverse and therefore more interesting, resulting in better research outcomes.” Other organisations also recognise the importance of FAIR data. To support the access to digital technology the Philips Foundation, together with the Dutch development bank FMO, CORDAID and the GO FAIR Foundation supported the research. The European Commission and ZonMW have already made FAIR data principles compulsory. Van Reisen hopes and expects that more partners will follow.  

Africa as a pioneer

In addition to a worldwide network, the ultimate goal is to have a FAIR data station in every Dutch hospital. "This will allow doctors to view all relevant data about a patient that has been collected by other healthcare professionals with permission of the patient." This will be based on the protocol Van Reisen is now implementing in Africa. "I am quite proud that Africa is now the first to apply this to the deepest level and is thus leading the way."

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