It’s an exciting time to be involved in real world, observational research, network studies and collaborations, and advancing the science, methods and skills involved.
It’s bittersweet right now due to the pandemic that we have seen as a result a considerable expansion of international observational research and collaborations via developing networks across the globe. The pandemic is acting as an accelerator of many innovations, this domain being one of them, and we would hope that we will continue to improve on a situation where too often the right data is not in the right place to answer the right questions.
With this in mind, we’re of course pleased that EHDEN could also contribute in the response to the pandemic via our network of Data Partners and SMEs, but also keenly aware, as are others, of the need to parallel development with upskilling.
In our original project intent a central aspect was to educate on optimising observational research, alongside infrastructure and evidence generation development. This is particularly demonstrated by our programme to train and certify selected SMEs (48 as of now, across 23 countries) to enable the ETL work cycles with Data Partners to the OMOP CDM. It was and remains clearly critical to ensure a rigorous, reproducible and consistent methodology across such diversity of Data Partners and their source data.
We have been very encouraged by the receptivity from all involved, and the impact on the execution of ETL work programmes, not to mention some excellent insights into how to improve and expand on our focus in this area of our shared goals. Three videos outlining such experience can be found here.
In a wider context, we have created further initiatives, some of which I’ll describe now:
Online: our presence, particularly EHDEN.eu and our social networks, are key in our communications, but also our education activity. We have been disseminating webinars, podcasts, videos and materials to a growing audience over time and recently launched the Voice of EHDEN podcast. Being able to humanise the experience, knowledge and insights to share with others in the research domain facilitates learning bearing in mind ultimately people relate to people best.
Education: We were delighted to take the SME learning pathway and build from this the EHDEN Academy as a free, online resource for education on ETL to the OMOP CDM, but also increasing the number of courses on tools, skills and methods using the OHDSI framework of a CDM and standardised analytical tools to conduct research using observational data. As of time of writing, we have 1,571 users to date, in 64 countries worldwide.
In conjunction with a faculty of OHDSI and EHDEN colleagues we now have ten courses, and are working on new courses from introductory content for the lay or public/patient groups (with the European Patients Forum (EPF), an EHDEN Partner) through to Regulatory Science and RWD/RWE, Health Technology Assessment, through to specific tools and methods vignettes developed in EHDEN and OHDSI. Watch this space….
Collaboration: with OHDSI colleagues we are leading the Education Working Group, which was initiated earlier this year. The WG is evaluating OHDSI’s educational resources and provision, with a proposed strategic plan to organise education along the lines of learning pathways with commensurate materials, for different individuals, institutions and organisations.
There is a wealth of educators, materials, courses, and meetings internationally in the EHDEN community, inclusive of the EHDEN Academy, and a passion for self-directed learning, but also the challenges of when such a community reaches a certain scale and expectations. We meet monthly on the second Friday of every month, and all are welcome to join us (via this online form).
Here in Europe it is noteworthy that within the European Commission’s European Health Data Space (EHDS) initiative, and the European Medicines Agency’s Big Data Taskforce with the Heads of Medical Authorities (HMA), upskilling was a priority to support the use of RWD in RWE generation. Numerous internationally acknowledged educational institutions/universities are all responding to this need. Other organisations, such as the recently launched GetReal Institute (GRI Academy), and the Health Data Research UK (HDRUK) initiative have developed academies, and indeed we will all be co-promoting our academies soon.
At the core of research is the need for stronger collaboration, but this is also the case for education, and indeed as we work in a federated manner with Data Partners in EHDEN, federation of educational activities and materials is a growing phenomenon. We will all benefit from the sheer diversity of being able to interact with educators internationally, participate with fellow students worldwide, and learning globally about and how to optimally generate evidence with RWD from across continents.
Nigel Hughes, EHDEN Project Lead/EHDEN Academy Director/Scientific Director, Epidemiology, Janssen R&D