Due to the global pandemic of COVID-19, we find ourselves in a time of unprecedented focus on health research. The call to action is clear: discover novel treatments, improve care practices, and ultimately cure COVID-19. The need to collaborate quickly and effectively across and within the public and private industry has never been greater.
One recent example is the European Health Data and Evidence Network (EHDEN), a project within the Innovative Medicines Initiative (IMI) and part of the IMI’s Big Data for Better Outcomes (BD4BO) initiative. The EHDEN has two leading partners, including the lead academic institution, Erasumus Medical Centre, Rotterdam, and its research coordinator, the University of Oxford.
In June 2020, EHDEN put out a call for collaborators in conjunction with the European Medicines Agency (EMA) and partners to help address COVID-19 in Europe. From this, the EHDEN is now working with 25 data partners in 10 European countries to map different COVID-19 clinical data to the Network’s common data model. When completed, this platform will include data from 1 million SARS-COV-2 tested patients, including 228,000 positive tests. Funding for this initiative is from the EMA specifically designated to increase the infrastructure for sharing and managing real-world data (RWD) and methodologies for better health decisions, outcomes, and patient care across Europe.
In addition to this ongoing work to expand COVID-19 data, the Network captures data from eight European countries standardized to their common data model and available for use. The network has contracted IQVIA as their coordinating partner, to facilitate dissemination to those interested in access.
The EHDEN was set up specifically to create high-quality insights and decision-grade evidence for stakeholders. The focus is to increase the speed of evidence generation, improve patient outcomes through a federated network of standardized multi-national data, and to facilitate access and common methodologies. EHDEN stakeholders include patients, clinicians, decision-makers, payers regulators, governments, and the pharmaceutical industry.
The European health-data has many similarities to Canada, where each province has independent jurisdiction over its health system data. Consequently, provincialized health data has created a patchwork of data systems across the country without a common data model, common data-use criteria, or standardized processes for access. That said, steps towards creating standardization across provinces were recently initiated as part of a grant from the Strategy for Patient-Oriented Research (SPOR) to create the Health Data Research Network (HDRN) Canada.
The main purpose of HDRN Canada is to help facilitate research requests for comparable data from multiple jurisdictions throughout the country. The aim of the HDRN is to connect requestors to the right coordinators and data sources from each independent data custodian, allowing for more multi-jurisdictional research to be conducted. The network started funding in early 2020, with a few initiatives already started, specifically one to support COVID-19 research.
HDRN Canada is part of the International COVID-19 Data Research Alliance and Workbench, which is a coordinated international platform to help facilitate the rapid development of insights and treatments for COVID-19. Four Canadian jurisdictions have already integrated COVID-19 test results into their data platforms, including Newfoundland, Alberta, Manitoba, and Ontario. Newfoundland and British Columbia are currently processing COVID-19 related data requests and are able to provide COVID-19 test results to researchers through HDRN Canada.
While some of the specifics of the HDRN Canada are still in development, key differences between the HDRN and the EHDEN include:
- Inclusion of only data providers in the HDRN Canada network
- Role of HDRN Canada as a mechanism to facilitate data requests from partner organizations instead of a holder of the data from different jurisdictions
- Focus on facilitating streamlined processes for accessing data via existing mechanisms
The EHDEN, on the other hand, has contracted a separate provider specifically for this purpose. At the time of posting, HDRN had not yet determined if HDRN would facilitate research from payers, regulators, or pharmaceutical companies as a part of their mandate whereas these were key stakeholders included in the development of the EHDEN from its inception.
For more information on EHDEN:
For more information on EHDEN’s COVID collaborations:
https://www.ehden.eu/ehdens-covid-19-rapid-collaboration-call-summary/
For more information on HDRN Canada:
For more information on HDRN Canada’s COVID collaborations:
