Making Health Data Available for Research: The Final Session #3

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 session

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.

The Hartwig Medical Foundation (HMF) envisions “The more we know, the better our care” and therefore aims to stimulate scientific research for improving prevention and treatment of cancer. Sandra van den Broek (Data scientist, HMF) presented the experiences and challenges faced while developing and implementing a procedure to request and access the Hartwig Medical Database – being the largest whole genome sequencing database of metastatic cancer.

Dr. Aletta Debernardi, director of PALGA, highlighted the various PALGA databanks and their corresponding procedures to request and access the wealthy source of >75 million records of >13 million patients. The experience by Debernardi is that PALGA’s Data Request Consultants (‘Adviseur Gegevensaanvragen’) play a fundamental role by assisting the requestor throughout his/her journey and ensures valid interpretation of the accessed data.

While both organisations include different types of data and procedures, both presenters emphasized that only joint efforts can ensure that the balance between meeting all access requirements and a workable access procedure for the researcher can be achieved.

More information

For more information on the solutions developed and presented by HMF and PALGA to enable findability and accessibility of data, we refer to the report or slides of this meeting. Moreover, more information on Collecting FAIR data and making data findable and linkable can be found in the first and second expert meetings in this series. 

Source: Health RI