BLOG – 2022 Trends in Health Data and for EHDEN

We at EHDEN hope that you had a recuperative break at the end of 2021, start of 2022, but of course this is well in the rear view mirror as we are already close to the end of January.

The project is already of course well immersed in our plans for the coming year, in particular as we will have our final Data Partner and SME calls, and a critical focus on evidence generation with our Data Partners as they complete their mapping to the OMOP CDM. Via the completion of our use cases (and development of new ones), study-a-thons, and evidence-thons (e-thons) we will further demonstrate the efficacy of the EHDEN network – and by so doing, deliver against our vision to enable better health decisions, outcomes and care, but also to support methodological and tools development to enhance standardised analytics on top of the CDM. The technical architecture being used to conduct research from Find through to Reuse in FAIR, as well as standardised analytics, transparency and reproducibility, will also figure highly in our work this year.

Building on all of this for our sustainability, through our legal not-for-profit entity, and in developing our service model, will be a major path through 2022 (and indeed beyond 2023 and 2024).

Meanwhile, and certainly a key trend for 2022, we will expand our training and upskilling provision via the Academy and in collaboration with the OHDSI Education Working Group. To ensure the conduct of good science utilising RWD for RWE generation, it is critical that colleagues can understand the use of e.g., the OMOP CDM, as well as feel proficient in using linked tools and methods alongside their experience and knowledge in conducting such research.

Of course, and unfortunately, this is all against a backdrop of the world still enduring COVID-19, and the massive impact on non-COVID-19 healthcare, on diagnosis, treatment and care. We will be responding to this worldwide for years, and having to cope with the real world implications for those who are not diagnosed until later, more progressed, and with poorer response to treatments than prior to the pandemic. The real world experience of patients within this will be ever more important to understand, as well as the healthcare system internationally as it deals with this, the impact also on healthcare workers, and other critical trends, such as the demographic timebomb.

Yet, and perhaps juxtaposed, there are multiple foci on informatic advancements in healthcare and with ever increasing expectations of what can be achieved. As an example, and perhaps due to the catalysing effect of the pandemic, telemedicine has increased in adoption across healthcare systems, but just like the whole debate about, ‘going back into the office’, we’ll have to see what the new balance will be for patients and their carers in terms of continuing with telemedicine, versus being back in a clinic. This has also not only impacted on clinical care, but also on clinical trials, with a clear upswing on the use of ‘remote studies’ (bringing a clinical study to the home, not in the clinic) to ensure continued development of therapeutic products during the pandemic, again, perhaps a catalysing effect. Both of these examples also will alter how we need to manage data use, inclusive of for research.

The pandemic also clearly reinforced something we know is a core challenge in healthcare, that the right data is not in the right place to answer the right question at the right time. There is now an even larger imperative to respond to this (indeed it’s why EHDEN exists, as an example), especially here in Europe with the advancement of the European Medicines Agency’s proposed DARWIN EU pharmacovigilance network, or the impending legislation from the EU Commission on the European Health Data Space (EHDS1, clinical; EHDS2, research). Both of these structures will change how we work with RWD and generate RWE for years, and likely decades to come, in particular on the learning health system, and will most likely commence this year.

If you also look at the ‘COVID Passport’, though there are many detractors on its use during and possibly  post the pandemic phase, it was quite remarkable how the EU developed this centrally with Member States, relatively rapidly, and we saw (albeit very focused) both the uptake and use of required digital apps, but also the reciprocity across Member States in recognising the apps and information contained. Is this a progenitor for the portable patient record at scale across the European region?

Perhaps further down the spectrum, the use of ‘artificial intelligence’ across healthcare has been promising or hyped, depending on your vantage point, but we continue to see an emphasis on how it is enabling precision or personalised medicine (definitely impacted at the point of delivery by the pandemic), and latterly the concept of the ‘digital twin’, which may be the ultimate in terms of a digital phenotype for clinical decision making and research. Let’s see what further progress is made over 2022.

As ever, it is difficult to predict, especially about the future (Niels Bohr), much of what we talk about in terms of trends in innovation are over years, not over 12 short months. We’re very proud of the progress we’ve made over our first three years, and have celebrated that (here), but we all know that the future year will be exciting, challenging and hard work, but we’re looking forward to collaborating with you all in doing so.

On behalf of EHDEN, Nigel Hughes

Scientific Director


Janssen, & EHDEN Project Lead