​Personal Health Train

A growing consortium of University Medical Centers, research organisations and private partners, in context of the DTL partnership, is developing a public-private partnership with the aim to develop and run the so-called ‘Personal Health Train’. Stations in the infrastructure will range from small personal ‘lockers’ with private data to large UMC based ‘stations’ all containing data in FAIR format. The name is a metaphor for the basic principle that ‘machine-learning’ algorithms visit secure, static and interoperable data, rather than data being transported to the high performance computer facilities.

Keeping the data where they are (and ‘belong’) is a trend that is seen everywhere and inspired by two major forces: first, personal and privacy sensitive data can not be easily ’sent elsewhere’ without major legal, social and ethical concerns, but in addition, datasets are increasingly too large to be effectively downloaded form their original location. With the European legislation becoming more and more restrictive, the general statement that ’the citizen’ is the legal owner of ‘data about that citizen’ is rather meaningless, unless the citizen is actually empowered (also technically) to decide on these data, how they can be used for research and other purposes and who is allowed and not allowed to do that. The Personal Health Train will enable just that. 

Prof. Barend Mons one of the founders of the consortium:

'I am very excited about the fast-growing interest in this approach and the growth of the consortium, extending already to the UK and Switzerland. Also it appears that nearly all elements of the ‘railway system and the personal lockers’ exist within the consortium and we can have something up and running early in 2016.

The movie is a short introduction to the project. Several specialised public and private health research funders in the Netherlands have recently expressed strong interest in this approach and the Top Sector LSH is strongly supportive of this way to support personalised health and medicine in practice. Also, citizens themselves are becoming more and more active in seeking information and solutions about their personal health and disease. The Personal Health Train will also enable active citizen participation in studies and activities concerning their health interests.

Prof. Nico van Meeteren (Executive Director Top Sector LSH):

‘The internationally known frontrunner-position of the Netherlands with regard to health, healthcare and healthcare innovations gets a boost from incorporating this Personal Health Train approach in the system as soon as possible. Such a boost would benefit all citizens and all Dutch healthcare stakeholders and, what is more, fuel our international top-position and health-industry export.’

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