In this third newsletter of the UMCs' programme Data4lifesciences, we are highlighting one of the work packages, "Reuse of clinical data for research" coordinated by Prof André Dekker. Also in this newsletter: a report on the vibrant Data4lifesciences event in September providing an overview of the first results of the Data4lifesciences program and an item on where to find the updated work plans on our website. And to put in your agenda: the upcoming annual meeting of Health-RI, the Dutch umbrella infrastructure for personalized medicine and health research.
Biomedical researchers work with increasingly complex and large datasets. In addition, they have to deal with stricter requirements in terms of data quality, management, and sharing. These challenges call for a high quality research infrastructure. To achieve this, the Netherlands Federation of University Medical Centres (NFU) has recently joined forces with several national research organisations in the Data4lifesciences programme. ‘We are building a shared infrastructure that will make biomedical research more efficient. This will improve both research and healthcare, which is obviously in everyone’s interest’, says Professor Folkert Kuipers.
Professors Folkert Kuipers and Frank Miedema are the chairmen of the Data4lifesciences programme. Frank Miedema explains: ‘In the past, researchers would perform a study, publish a scientific article, and then the data would often be lost. This is a waste of money because other researchers would have to repeat the study in order to get the data. Data4lifesciences will ensure that research data is stored properly so that it can be reused. Our ambition is high. The UMCs want to jointly ensure that the data that is produced within the UMCs is treated adequately. This means, among other things, that the data is findable and reusable by others. An infrastructure is basically everything you need to make this possible. So research infrastructures do not only relate to IT, but also focus on quality assurance and expertise development.’
Folkert Kuipers: ‘Many research infrastructures have already been set up in the Netherlands. National programmes such as TralT, BBMRI-NL, Parelsnoer, DTL/ELIXIR-NL, AcZie, Mondriaan, and SURF have achieved a great deal. But the data are still scattered and often get lost. It is now crucial for us to combine these early initiatives into national and international infrastructures. The UMCs are in an excellent position to achieve this goal; we cannot let this chance pass.’ (Read the interview with Data4lifesciences project manager Jan-Willem Boiten to find out why this is expedient now.)
Data4lifesciences consists of several sub-projects, most of which are currently well under way. They are creating:
The basis for the implementation of the shared infrastructure is a manual for researchers on how to handle data (data stewardship). ‘The first version of this Handbook for Adequate Natural Data Stewardship, or HANDS, was presented at the conference Empowering Personalised Medicine and Health Research on 4 November 2015. HANDS contains guidelines relating to patient safety, protection of privacy, patient participation, ethics, monitoring of data quality, legislation, and so on. It will help the people that generate data to take their responsibility for data stewardship. So basically, it all starts with HANDS’, says Folkert Kuipers. (Read the article about HANDS.)
‘The Data4lifesciences programme has been in preparation for several years now and we still have a long way to go. It is quite a challenge to get the eight UMCs in line. It is a tough job, but I consider this our academic duty. The people involved in Data4lifesciences do this job to serve other people; they have no personal gain from it’, says Frank Miedema. ‘We are really seeing progress now. I definitely think HANDS will be well-noticed on the work floor.’
The future is bright
Frank Miedema: ‘The ambitions of Data4lifesciences seamlessly fit into the Netherlands’ upcoming Presidency of the Council of the EU. State Secretary Sander Dekker has chosen open science as a theme. This extends much further than open access: it means data should become immediately available. It will make scientific research more efficient. From a patient’s perspective, this is the right thing to do.
Large societal organisations such as the Netherlands Organisation for Scientific Research (NWO), the Netherlands Organisation for Health Research and Development (ZonMw), and the Dutch Cancer Society (KWF) have also prioritised good data stewardship and data reuse. We are moving from a situation where a single researcher or research group received funding to a situation where science as a whole receives funding. This truly is a shift in our thinking.’