The initiative for a national Health Research Infrastructure (Health-RI) is gaining momentum this year. ZonMw interviewed Explorer Leone Flikweert of Health-RI about the importance of Health-RI.
In 2019, the Health-RI organization will take concrete steps towards a national infrastructure for health data, images and samples, together with tools and facilities for optimal use. This is good news for researchers in the field of personalized medicine, for caregivers and for patients.
The sharing of data and materials is increasingly recognized as the norm and that is good news. Ultimately, we want to create a research data infrastructure that is sustainable and no longer dependent of project subsidies. "It is a bit like the environment: everyone agrees upon its importance, but it takes a while before everyone take pains to act and pay for it. Therefore, it is great that the ZonMw’s Personalized Medicine program already recognized the importance of Health-RI at an early stage and actively contributed to several important projects."
2019 kicks off with the Health-RI Conference on January 17th, with the theme Opening doors to P4 Health – prediction, prevention, personalization, and participation (P4). More and more people realize that data and samples of many patients and healthy citizens are needed to realize a learning care-system. This allows for scientific substantiation of prevention and tailored treatment.
"Participation is key – we hope that as many as possible research institutes and care organizations will participate, as well as patients and healthy citizens."
Making data, images and samples accessible for (other) researchers was already the focal point of several initiatives, such as the Data4LifeSciences program, BBMRI-NL, and the Parelsnoer Institute. However, health data are one of the most privacy sensitive data known. It is therefore important to think carefully and develop reliable solutions and the financial sector might serve as an example. For patients and health care providers the concept of the Personal Health Train can be of interest. The ELSI Servicedesk, installed in 2018 with the aid of ZonMw’s Personalised Medicine program, helps researchers who have questions about ethical, legal and societal aspects of personalized medicine & next generation sequencing. In the near future, Health-RI plans to set up similar service desks, e.g. for researchers with commonly occurring problems concerning software and data storage.
The Netherlands signed the MEGA declaration (Million European Genomes Alliance) in 2018 and Health-RI is glad that this international collaboration will start sequencing the genome of one million Europeans. The data will be made accessible for European research as to accelerate knowledge development and personalized health. Just as important is that genome data generation and storage, and the conditions of accessiblity of the data will be agreed upon within the MEGA collaboration. This enhances the exchangability of the data within Europe and sets the standard for mutual exchange.
For Health-RI, an important step in 2019 will be the dialogue that is now being set up – with researchers, data stewards, IT-professionals and others. Flikweert and her colleagues are preparing a ‘roadshow’ that will visit all medical knowledge institutes in the Netherlands. "What are the problems, what’s on the wishing list and what are priorities? This will be the input for our action plan so that we can jointly move forward on the way to Personalized Medicine. From thinking to doing, that’s our 2019 theme"
Tekst: Pieter van Megchelen
Photo: Rob ter Bekke
Read the ZonMw article here (in Dutch).