The EHDEN project Consortium, like everyone, is looking forward to a recuperative and hopefully safe break over the festive season in Europe, and wishes the same for all our colleagues and partners, too. It has been a hard year, against a backdrop of a continuing COVID-19 pandemic and now the rise of the Omicron SARS-COV-2 variant.
Though we have much to celebrate in EHDEN, it is tempered with the knowledge that many of those we work with have been under unrelenting pressure in the clinical environment due to the double impact directly of COVID-19 morbidity and mortality, and indirectly the damage wrought on routine, non-COVID-19 care. It is even more remarkable that our Data Partners and researcher colleagues have continued the journey with us in EHDEN, and we commend them all for doing so.
At the time of writing this blog, EHDEN has held its sixth General Assembly meeting for the Consortium, and wider network, an important one at the start of year four of the project, and it served to highlight our achievements, but also areas for continuing development:
- We demonstrated internally the initial tools of the EHDEN Portal, our Data Partner Catalogue of individual Data Partner profiles (fingerprint browser), and feasibility tools, derived from their common data model (CDM) mapped datasets in various dashboards. This will go live in the New Year, with initial user experience and feedback work
- EHDEN is pivoting right now from the foundational work on developing our network of Data Partner collaborators, and certified Small-to-Medium-Sized Enterprises (SMEs), with our last open calls for both in 2022, to a focus on evidence generation and education:
- In the first four open calls for Data Partners we grew to 98 in 23 countries, mapping ~450 million records to the CDM, with the outcome of our fifth imminently to be announced, but we’re assuming we’ll increase the network by 50% or so. A new development in conjunction with OHDSI Europe: the development of country national nodes in several of our partner countries, watch this space….We’re also delighted with our bi-monthly Community calls led by our Community Manager for Data Partners and SMEs, with a regular attendance now of ~100 per meeting
- We now work with 47 independent SMEs in 19 countries, a unique network internationally. While our SMEs have focused on working with EHDEN Data Partners, a number are also mapping their own customer base to the OMOP CDM, supporting education and awareness, while also engaging within the OHDSI community
- Our evidence use-cases continue, and we will expand our research work with Data Partners once they have mapped their datasets to the CDM via e-thons, as well as conducting network studies and study-a-thons. EHDEN has contributed to ~40 publications to date, a number in high impact journals, and with a considerable effort around COVID-19 in terms of our response to the pandemic
- The EHDEN Academy has seen more than 1,800 accounts, with more than 1,400 enrollees, and a remarkable 1,800 courses completed. We are now at 14 courses, inclusive of the European Patients’ Forum (EPF) driven non-expert course, and aim to expand this considerably in 2022. Astonishingly, participants hail from almost 70 countries worldwide. We also started co-promoting the EHDEN Academy with the GetReal Institute Academy, and the HDR-UK Academy, as well as within OHDSI, and look forward to working with them in 2022, while leading the OHDSI Education Working Group this year, focusing on the EHDEN education strategy. We need to expand on these efforts to ensure we can upskill and support colleagues from Data Partners and Researchers, and many others, and have exciting plans in this direction
In terms of research, we have conducted novel and innovative work regarding methodology and predictive analytics across analytical tools, quality dashboards, and in federated predictive modelling. Linked to this has been the work on the study workflow in terms of how research will be conducted within EHDEN as the various strands from technical architecture through to skills, methods and tools. A number of IMI Deliverables outlining our work are already available here, and will be added to in the New Year.
There has been very intriguing work in the realm of health technology assessment, and outcomes, while we evaluate the methodological and tools development to support utilisation of RWD for RWE generation in this domain, and this will be a focus for upcoming work in terms of expanding on the impact of EHDEN.
Our collaboration with OHDSI has deepened right from the start of EHDEN, but definitely the COVID-19 study-a-thon in 2020 considerably was an (unfortunate) high point, but this year we also saw a strengthening of our collaboration with IMI_PIONEER following their study-a-thon in prostate cancer and watchful waiting, while we interact with perhaps 20 or so IMI projects. The Innovative Health Initiative (formerly Innovative Medicines Initiative, IMI) has been a remarkable environment in which to see collaboration across ‘data-related’ projects, and indeed the utilisation of the OMOP CDM.
For EHDEN, sustainability is critical to ensuring the future of this impressive work, both in terms of the network, but also in terms of long-term evidence generation and impact on outcomes for the healthcare system and patients. We’re delighted that a not-for-profit legal entity has been incorporated in The Netherlands and we look forward to it paralleling the project as we are in start up mode for post the IMI phase (ending in 2024).
Many of you reading this will be very aware of wider movement in the European region around infrastructure and utilising health data, such as the European Commission’s legislative pathway on the European Health Data Space, the TEHDAS Joint Action, or the European Medicines Agency’s DARWIN EU proposed network, and EHDEN has also been very active with regard to these. The New Year will bring some potentially paradigm-impacting changes, whether evolutionary or revolutionary.
We also welcomed a new EFPIA Partner, Boehringer Ingelheim, to our Consortium, who bring considerable experience and interest in the OMOP CDM and OHDSI research framework, and we continue to receive interest in how to join the EHDEN family in our journey. It is very positive to see such widening awareness of EHDEN, but we will never rest on our laurels in terms of engagement, communication and education. We wrapped up the Voice of EHDEN podcast season one (eight episodes), and are already working on season 2 for the first half of 2022 with an even more international line up of participants.
Much work to be done, on top of amazing foundations (watch out for a forthcoming summary document on our first three years) and certainly 2022 will be even busier than 2021. Dependent on the trajectory of the pandemic, the OHDSI Europe Symposium is planned for 11-13 March, aboard the SS Rotterdam (where EHDEN held its launch meeting), we’re keeping all our fingers crossed, but registrations are being snapped up fast!
On behalf of EHDEN, keep well, safe and enjoy this time with those important to you during what we hope is a restorative festive season, looking forward to a time where we emerge from COVID-19 and can live, and work, more freely.
On behalf of EHDEN, Nigel Hughes
Janssen, & EHDEN Project Lead.