Health-RIHealth Research Infrastructure


Mw. Leone Flikweert
Jaarbeursplein 6, 3521 AL UTRECHT
Leiden UMC, Erasmus MC, UMC Groningen, Maastricht UMC+, Radboudumc, Amsterdam UMC, UMC Utrecht, NKI/AVL

Health-RI is the Dutch data infrastructure supporting world class data-driven life sciences to reach novel insights in health and disease mechanisms ultimately leading to more personalized approaches within healthcare and prevention. Today, individual research institutions are unable to generate statistically relevant data sets; data sharing has therefore become a prerequisite for research in this field. Large and rich FAIR data collections, professional support for researchers, as well as software, tools and other services to effectively exploit these data have become extremely important. An integrated health data research infrastructure covering all those aspects and fostering collaboration is essential. Health-RI is building this infrastructure as a public-private partnership of organizations involved in health research and care. More than 70 leading organizations in the Netherlands endorse our efforts to build this crucial resource for research.

Our increasing knowledge of underlying mechanisms of health and disease has led to the recognition that diseases that until recently were considered homogeneous, now turn out to be multifold in nature. While diseases like breast cancer and lung cancer until recently were considered to represent at most three subclasses, this number now has risen to more than ten. Consequently, no single institution on its own still has access to meaningful numbers of patients in these sub categories, and data sharing has become a prerequisite for any meaningful research in this field. Also, successful application of potentially very powerful new technologies like AI are critically data dependent. All such approaches require the use of high-quality multidimensional and longitudinal data on individuals, which can be biospecimens, clinical data, data from large population cohorts, medical imaging data, as well as data collected through devices such as smart phones. The great promise of novel technologies such as next generation DNA sequencing and Artificial Intelligence are currently not being materialized in the health domain due to the lack of high-quality health outcome data needed to apply or correlate these techniques to. Only a concerted action can provide the numbers of well-annotated patients and healthy volunteers needed to get statistically meaningful results.

Health-RI facilitates researchers in data-driven life sciences by offering the tools for proper data management and stewardship in line with the FAIR data and Open Science policies. Equipped with the data and tools to develop a better understanding of the transition between health and disease, the Dutch health research community will be able to realize the personal and societal benefits of personalized, predictive and participatory research for the good of the nation. Health-RI facilitates the development of algorithms to predict and detect these transitions in individuals, and personalized treatments to reverse them with little or no side effects. The tools Health-RI will offer range from software tools, to ethical/legal guidelines, to an overview of data resources and research facilities.

Health-RI is the leading national knowledge broker on data infrastructure topics for health research. Health-RI is the organization engaged at the national level in discussions related to reuse of clinical care data for scientific research, and legislation to make the use of personal data or samples easier, without harming the privacy of individuals. Health-RI is creating a leading national force in this field.

The strategy of Health-RI follows three lines of action:
1. Collective voice: represent the national health research community to optimize the conditions for building and maintaining a national health data infrastructure;
2. National health data infrastructure: fostering and facilitating innovative initiatives to build and consolidate the next-generation health data infrastructure to support the health-oriented life sciences;
3. Providing mature services: supporting life-sciences researchers throughout the health research process with services, tools and (distributed) access to FAIR collections to boost health research.

Health-RI is the Dutch counterpart of initiatives in other countries like the Medical Informatics Initiative (Germany, EUR 250M), Precision Medicine initiative (USA, USD 500M), Genomics England/UK Biobank/UK Health Data (UK, GBP 250M), SPHN (CH, ERU 68M) and the French Health data hub (in all cases with major support from the national governments) and is seen in Europe as an example of how infrastructure could be organized more collaboratively, user centric, and more efficiently.

Aansluiting bij strategische ontwikkelingen
Life Sciences & Health
Personalised medicine: uitgaan van het individu
Regeneratieve Geneeskunde: game changer op weg naar brede toepassing
Gezondheidszorgonderzoek, preventie en behandeling