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Making health data available for research. The next step. Expert meeting#1 2021

On September 9, 2021, Health-RI and BBMRI.nl held the first of three new expert meetings to discuss the next step in making health data available for research. This time focusing on collecting FAIR data.

The meeting focused on FAIR principles, the added value of collecting FAIR data, and the various methods and standards to achieve this. The participants came from all kinds of backgrounds. This brought about great discussions and concrete suggestions for tools and standards to FAIRify data at the source.

You can read the meeting report or view the slides separately.

 


Making health data available for research. The next step. Expert Meeting#2 2021

The 2nd BBMRI & Health-RI expert session on Thursday September 23, focused on the various strategies available to make health data findable and linkable

The 57 participants from various parties attended the session and had constructive discussions; best practices were shared, but also the hurdles in linking data that still exist. Two main difficulties were identified that need to be addressed: the GDPR and the different organization of data sources that you would like to link with each other.

You can read the meeting report or view the slides separately.


Making health data available for research. The next step. Expert meeting #3 2021

On October 7, 2021, Health-RI and BBMRI.nl organised the third and final session of this year’s expert meeting series discussing the next step in making health data available for research.

The discussion was driven by 57 attending experts and focussed on the procedures and tools to enable findability and accessibility of data. Prof. dr. Folkert van Kemenade (ErasmusMC) introduced the journey within BBMRI.nl to develop the tools facilitating findability and accessibility of data, being the portals Catalogue and Podium respectively.

You can read the meeting report or view the slides separately.

The video of this meeting will follow shortly.


How to make health data available for research? Expert Meeting#1

BBMRI.nl and Health-RI organised three virtual expert meetings to discuss different practical approaches to make health data available for scientific use. Different approaches, all with their own strengths and weaknesses.

A health research infrastructure is crucial to enable optimal access to knowledge, tools, facilities, health data and samples. It enables a healthcare system offering sustainable and affordable personalized medicine and health.

But how should this infrastructure be shaped? Which organisations currently provide such services? And how do they provide access to their data?

In the first expert meeting on the 29th of October 2020, Fatima El Messlaki from CBS, (Statistics Netherlands) and Saskia Houterman from the Netherlands Heart Registration (NHR) presented how they find, access, request, share and link data within their organizations.

You can read the meeting report or view the slides separately.


How to make health data available for research? Expert Meeting#2

During the second meeting held on the 12th of November, the processes to find, access, request, share and link data within the CAPACITY study of the Durrer Center were presented by Wanda Hermans-Van Ast and Erik van Iperen. The data requesting, -sharing and -analyse procedures within Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland; IKNL) were presented by Vincent Ho and Peter Prinsen.

You can read the meeting report or view the slides separately.


How to make health data available for research? Expert Meeting #3

During the third expert meeting held on the 26th of November, Trynke de Jong presented the processes to find, access, request, share and link data within Lifelines. Pascal Suppers highlighted the experiences of DataHub.

You can read the report or view the slides separately.


Health-RI

Watch the video about Health-RI, the single National Infrastructure for Personalized Medicine & Health Research in the Netherlands here.


Personal Health Train

The Personal Health Train (PHT) aims to connect distributed health data. The idea is to move an algorithm around to where data are stored, instead of moving the data to a central place. This helps ensure privacy protection. The video below explains how the PHT works.


Vision on Open Science

BBMRI supports Open Science: an umbrella term for a technology and data driven systemic change in how researchers work, collaborate, share ideas, disseminate and reuse results, by adopting the core values that knowledge should be FAIR: Findable, Accessible, Interoperable and Reusable (FAIR). However, securing the ‘technicalities’ needed for optimal reuse is necessary, but not sufficient. The entire method of scientific research is in rapid transition. The movie depicts the vision of BBMRI and its partners on how this transition should happen.


X-Omics

World-renowned Dutch experts in genomics, proteomics, metabolomics, and data integration & analysis have launched the Netherlands X-Omics Initiative. This initiative aims to radically improve technological approaches to study biomolecules such as DNA, RNA, proteins and metabolites. This will help researchers understand the fundamentals of life, which is crucial to unravel mechanisms of health and disease.