In this first newsletter, we would like to introduce you to The Netherlands Federation of UMCs programme Data4lifesciences: what is Data4lifesciences, why do we need this programme, who is involved, and what is the status? Also in this newsletter more information about HANDS, a product of Data4lifesciences. This Handbook for Adequate Natural Data Stewardship will assist every researcher in their research and provides both guidelines and pratical tools, infrastructure and expertise for handling research data.
Scientific breakthroughs and technological innovations create opportunities to tailor healthcare to the individual patient. However, it often takes long before innovations translate into personalised medicine in practice. ‘An important obstacle is the lack of an efficient national data infrastructure for biomedical research’, says Dr. Jan-Willem Boiten. He is the programme manager of Data4lifesciences.
Personalised medicine tailors healthcare (i.e., prevention, diagnostics, prognostics, or treatment) to the individual patient based on his or her molecular characteristics. These may be biomarkers such as DNA variations that predict the success of a treatment. But personalised medicine is more than biomarkers. It is often called P4 medicine: personal, preventive, predictive, and participatory. The holy grail of P4 medicine is preventing disease and managing one’s personal health rather than managing disease.
‘P4 medicine is a wonderful prospect, but we still have quite a long way to go before the scientific progress can be applied in clinical practice’, says Jan-Willem Boiten. ‘The technological advances that have made personalised medicine possible have also resulted in an explosive growth of complex research data. And a personalised approach calls for large groups of study subjects. At the same time, there are privacy issues and discussions about data ownership. These data-related challenges ask for collaboration and an adequate infrastructure. That is what the Data4lifesciences programme aims to deliver.’ (Read more about the envisaged infrastructure.)
Data4lifesciences is coordinated by the Netherlands Federation of University Medical Centres (NFU). Jan-Willem Boiten: ‘Programmes such as TralT, BBMRI-NL, Parelsnoer, and DTL have made the first important moves towards better research infrastructures. But the UMCs cannot afford to rely on these programmes alone because their long-term funding is uncertain. We need coordinated action to sustain and expand these founding infrastructures, so that we can guarantee their continuity.’
Additional urgent reasons for adapting the current infrastructure are the upcoming EU privacy regulations, the implementation of new electronic health records, and more stringent requirements for the quality of data management and reusability of data by important research sponsors (e.g., the Netherlands Organisation for Scientific Research NWO, the Netherlands Organisation for Health Research and Development ZonMW, and the Dutch Cancer Society KWF).
Jan-Willem Boiten: ‘Collaboration is the only way forward. An example of our collaborative efforts is the conference Empowering Personalised Medicine and Health Research that was held on 4 November 2015. This conference was an initiative of BBMRI-NL, DTL/ELIXIR-NL, and EATRIS. An impressive list of organisations joined the initiative (e.g., Federa/COREON, FHI, FMS, and NFU) and it was supported by large research funders such as NWO, ZonMW, and KWF.
‘The people involved in Data4lifesciences are really enthusiastic’, says Jan-Willem Boiten. ‘There is broad support for collaboration. This is truly special, because these people are former competitors. And it is a bottom-up initiative, i.e., people from the work floor are actively involved in the programme. The time is right to bridge the gap between technological progress and personalised medicine in clinical practice.’