Harnessing Real-World Data: Are We There Yet? (Guest blog)

“We’re drowning in data, yet thirst for knowledge.” This is an apt description of how the transformational potential of real-world data is not being used anywhere near its potential. More to the point, every day, patients across Europe (and the world) are not receiving optimal care. Why? Because we haven’t yet evolved to a place where real-world data is creating insights that lead to improved systems and new treatment options.

For the most part, today’s health data landscape is still lingering in the 20th century. It consists largely of a myriad of languages, systems and structures, fraught with challenging policy restrictions and technology considerations. Yet, there is much to be optimistic about…

It was in response to these challenges and under the framework of the IMI2 (Innovative Medicines Initiative) that gave rise to a range of projects, e.g., Big Data For Better Outcomes (BD4BO), whose primary purpose is to create federated networks of health research data centres that will ultimately generate insights that will improve patient outcomes. Some of these initiatives are disease-specific. The European Health Data & Evidence Network (EHDEN), whose five-year programme was formally launched in November 2018, is disease-agnostic. It’s stated mission is to develop a federated network, standardised to a common data model that more smartly manages and shares research methodologies, and expands education in open science and collaboration.

EHDEN is a consortium of twenty-two partners, eleven public, led by the Erasmus Medical Centre, and eleven pharmaceutical companies, led by Janssen. Its aspirations are significant. In short, EHDEN aims to harmonise 100 million health records across multiple data sources such as hospitals and primary care networks. These data centres can obtain funding from the EHDEN Harmonisation Fund to obtain support from certified SMEs through serial open calls. Reaching the 100 million health record target is important, but hitting this mark is not enough. Only when Europe is generating reliable answers to complex medical questions at a higher speed – and that lead to better outcomes, irrespective of disease and geography, can EHDEN be considered a success story.

Suffice it to say, a strong spirit of sharing and collaboration are essential to EHDEN achieving its goals. Establishing a federated network of data sources will serve as the framework, but central to EHDEN’s success is the standardisation of health data to the OMOP common data model and the utilisation of new analytical tools such as those developed by the International Observational Health Data Sciences and Informatics (OHDSI) open science collaboration, and others. EHDEN will accelerate the adoption and uptake of the OMOP model and these OHDSI tools and methodologies, across Europe. This, in turn, will speed up the process to generate reliable evidence, whilst ensuring transparency and reproducibility.

So, are we there yet? No, but it’s clear that the advent of large-scale federated networks and projects like EHDEN and many others are set to change the way health data is shared and managed for years and decades to come. In short, this will establish 21st century tools for 21st century research that will enable us to tap into the transformational potential of real-world data.

Let this blog post serve as an open invitation: if you belong to an institute or association that manages patient health datasets, you can contact us on our website to become an EHDEN data partner. If you recognise how sharing anonymous health data can benefit society and other patients, you can show your support by helping to spread the word about EHDEN.

Nigel Hughes

Nigel Hughes is the Scientific Director of Observational Health Data Analytics/Epidemiology at Janssen Research...
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