The COVID-19 rapid collaboration call chronicle – Part 3

The COVID-19 rapid collaboration call chronicle - Part 3

Part 3 of the chronicle looks at progress to date since the initial call; here are Part 1 and Part 2.

While an increasing number of people across Europe have been vaccinated, but are still under the threat of emerging COVID-19 variants, the battle to win the fight against the pandemic continues.  To help provide more insights about the safety and efficacy of certain treatments, EHDEN held a rolling COVID-19 rapid collaboration call with Data Partners (DPs) across Europe, which ran from 16 April – 14 May 2020.

Seventy-five applications were received and twenty-five of these DPs were selected from ten countries. This includes data from one million COVID-19-tested patients – 228,000 of whom tested positive. These DPs became part of an open science group that have since been coming together weekly (virtually) to share their representative and relevant (anonymised) COVID-19 clinical data. In order for this data to be shared amongst researchers and studies carried out, it first needs to be standardised by putting it into the OMOP Common Data Model (CDM).  Financial and technical support is being made available to assist DPs in harmonising their data to the OMOP CDM.

How are we progressing?

The main objective of the call is to harmonise real-world COVID-19 data (local to them) from the participating DPs, ensure that they have correctly mapped their data to the OMOP CDM, and begin conducting relevant analyses in collaboration with other DPs. To this end, EHDEN created an ETL (extract, transform, load) Task Force to work closely with the DPs, answer their questions, and familiarise them with the OHDSI/EHDEN tools and way of working. The free and on-demand EHDEN Academy courses, e.g., ATLAS, ETL/CDM tutorials also played a key role in this education.

“We’re extremely pleased with the enthusiastic response we got from across Europe to join this rapid collaboration call,” said Peter Rijnbeek, Associate Professor Health Data Science at Erasmus MC and EHDEN Project Coordinator. “Having these weekly interactions has strengthened our relationships with these DPs and the spirit of collaboration within the research community. Most importantly, it paves the way for them to confidently conduct research in a federated network and generate meaningful insights and real-world evidence well beyond COVID-19,” he added.

To ensure safety of patient data, EHDEN operates as a federated network model where all patient-level data is anonymised, remains local and analytical tools are brought to data, with oversight by the DP and local governance.

Research sharing during COVID-19

Real-world data is often fragmented, siloed in poorly interoperable systems and requires considerable curation to work under normal conditions. COVID-19 poses an extra level of complexity, especially as many of the DPs are on the front line combatting COVID-19 and some were even being treated for it.

Erica Voss, Director, Observational Health Data Analytics at Janssen Research & Development, commented, “The commitment we’re seeing from the DPs under these very challenging conditions is truly inspirational. Many of them told us how the weekly frequency of the calls required them to be disciplined and ‘come prepared’. This positive accountability contributed to their rapid education and now, with most having completed their mapping, has them keen to become more active conducting studies and keep their CDM updated with new data.”

To build on this momentum, EHDEN will begin running a series of evidence-a-thons (ETHONS), the first of which will be held on 21-22 July and will focus on COVID-19 data. “We’re looking forward to this first evidence-a-thon,” noted Clair Blacketer, Associate Director, Observational Health Data Analytics, Janssen Research & Development. “It’s been very gratifying to see how the DPs have evolved since our first call in April/May 2020. A high-quality foundation is now in place and the evidence-a-thon will serve as a springboard for DPs to initiate and participate in research studies going forward.”

Keep an eye out as we will be sharing research study insights from the July evidence-a-thon and other analyses.