In response to the current outbreak of coronavirus disease (COVID-19) local research actions are taking place across the world. Health-RI, the Dutch national initiative to facilitate and stimulate an integrated health data infrastructure, will facilitate investigators by connecting communities, providing data services and tools and presenting an overview of COVID-19 related initiatives.
Data services and tools to facilitate COVID-19 research
The battle against COVID-19 is heavily data dependent. Finding the right data sets, curating them where necessary, making them accessible to researchers, linking - data from many different sources and making rich data sets reusable often is nontrivial.
In alignment with RIVM, VWS, SURF, NFU and all the UMC’s, Health-RI is actively collecting COVID-19 related data initiatives to promote collaboration and prevent fragmentation of research efforts.
Health-RI is updating and adding COVID-19 related databanks, biobanks and sample collections in the BBMRI.nl Catalogue. Collections are marked with a ‘COVID-19’ filter to make ongoing research, available resources and collaboration possibilities clear to researchers.
You can make your new COVID-19 data collection available through the BBMRI.nl Catalogue, or disclose COVID-19 relevant information or services in your existing collection in the BBMRI-nl Catalogue.
Podium, a ‘webshop’ system will give access to data collections, efficiently and safely. It can be used by researchers and organizations alike to manage and facilitate the research request workflow of data/samples/images.
Data are located at various places. Health-RI can help researchers with using the Personal Health Train principles to make optimal use of the distributed data. Health-RI also offers expertise on more traditional methods of connecting data.
Health-RI hosts and supports a solid pipeline for managing large quantities of radiology images, pseudonymisation of DICOM images and making these available for research (CTP and XNAT).
COVID-19 – Interoperable CRFs
If you collect clinical data from COVID-19 patients, make sure to use the WHO case record forms. The March 23rd 2020 NOVEL CORONAVIRUS (COVID-19) - RAPID VERSION can be downloaded here.
VODAN, together with GO-FAIR, AmsterdamUMC (CovidPredict: central national patient database), RadboudUMC and the NKI, are working on a semantic data model and code book to make data created with these forms interoperable. They also work on expanding these forms with specific parameters for a.o. radiology related data (e.g. CORAD scores). The model aims to provide semantic references to the questions and answers of the form. The latest version of this model can be found in BioPortal.
If you have any questions, please do not hesitate to ask Health-RI.nl
Answers to many ELSI related questions can be found on the ELSI Servicedesk. Together with the ELSI Servicedesk and several partners, Health-RI is working on urgent needs that have arisen in the context of COVID-19. For example: how do we organize patients’ consent or objection in a fast, legally and ethically sound way when collecting data or samples for COVID-19 research. Furthermore, guidelines and formats for the access and use of collected data and samples are being developed. As new guidelines or procedures become available, they will be published on the ELSI Servicedesk. To ensure that we will address the right needs, we welcome your experiences, hurdles and issues. Please email to firstname.lastname@example.org (put “ELSI” in the subject line).
Best practices for data sharing policies
Health-RI plans to publish several best practices for data sharing policies and templates that can be used as a starter kit for new COVID-19 studies that want to make their data available to other researchers. Download a first draft of a guide to data governance in COVID-19 studies (in Dutch)
Call for COVID-19 data initiatives
Health-RI is actively collecting starting and ongoing COVID-19 related initiatives. This will make collaborations easier and prevent fragmented research.
Connecting research and health communities
Connecting research efforts will lead to faster results. Health-RI offers a platform for collaboration between communities such as clinical researchers, physicians, biobankers, data experts and IT experts.
Health-RI is collaborating with VWS, RIVM and SURF and has full commitment from partnering organizations such as BBMRI.nl, ELXIR-NL, DTL, TraIT, Personal Health Train, and the ELSI servicedesk.
Health-RI connects to international initiatives such as VODAN (Virus Outbreak Data Network) and others such as EOSC-Life.