I don’t know how familiar you are with HONEUR? Or FDNs? Or how they help harness the power of RWD? One thing’s for sure, this vital area of work certainly illustrates our love of acronyms.

HONEUR (Haematology Outcomes Network in Europe) is a Federated Data Network (FDN). It was created to help improve the way we share and analyse Real-World Data (RWD) from patients with blood cancers. The aim is to increase our knowledge and understanding of haematological malignancies, with the ultimate goal of improving patient outcomes.

And what excites me about HONEUR is not just its potential to answer a variety of different research questions in oncology, but that it’s a truly collaborate, interdisciplinary initiative.

Since Janssen set it up, HONEUR has been growing in size and scientific impact. We currently have nineteen partners across Europe, from nine countries, with data from nearly 50,000 patients available for analysis , which enables multinational studies to be undertaken rapidly and efficiently. We are set to increase our HONEUR data partner network to 22 data partners by the end of this year.

Our recent publications: HONEUR functionality and oncological FDNs

We recently published a paper  in a peer-reviewed medical journal (the European Journal of Haematology) [1] ;that explains HONEUR in depth – who’s involved, how it works, and what it can do. It describes how the network is an important step towards increasing the value of information that’s normally just held by individual hospitals, registries and other database owners. 

FDNs like HONEUR can – crucially – keep all these data secure, private and anonymous, and still held locally, while also allowing access to answer key clinical questions and generate Real-World Evidence (RWE) [2] .

And we delved into the value of FDNs in oncology in a previous paper, published in ISPOR’s Value in Health Journal.[3] We ran a systematic literature review to see what types of research questions were being addressed through oncological FDNs. It revealed that 58% of studies focused on the natural history of disease. The results also identified several overlooked areas, including the patients’ perspective and outcomes in particular patient subgroups.

Our ongoing mission

RWD can complement data from randomized controlled trials[4], and help to inform both health technology assessment decision-making and clinical practice guidelines. And FDNs are a powerful tool when it comes to unlocking the potential of RWD.

So it’s great to see key research questions being addressed, and it’s critical that stakeholders understand the role that FDNs can play and the value they are able to offer in addressing specific types of research questions, and that interested parties are welcome to participate in these sorts of networks.

HONEUR has conducted a set of successful study collaborations with data partners, and expects to publish the results soon, along with details of a growing number of ongoing RWE studies.

Our invitation

But, really, we’re just getting started. HONEUR offers a secure, collaborative platform from which to analyse RWD to partnering data centres across Europe. And you’re welcome to join us.

To find out more, take a deep dive into the two papers I mentioned earlier, take a look at the HONEUR website, or get in touch with Kristina Bardenheuer.

References