Podcasts – Voice of EHDEN season 1

Voice of EHDEN Episode #8 - Using historical data to predict patients' future outcomes and exciting times for predictive, federated modelling with Peter Rijnbeek

In this episode, we explore developments in predictive modelling and its growing impact in research and for clinical practice, with a focus on methodology, quality and lessons learned. Our guest in this episode is Peter Rijnbeek, Assoc Prof, Health Data Sciences at Erasmus MC, Rotterdam,  and he is the Coordinator for EHDEN, in the leadership committee of OHDSI, and leading OHDSI Europe, as well as the OHDSI Predictive Modelling Working Group (with Jenna Reps, Janssen R&D). We start with briefly reflecting on the end of year three for EHDEN and the focus on evidence generation within the network of Data Partners. Peter covers initial basics of what is predictive modelling, the opportunities and challenges today, and demonstrative use cases across therapeutic areas, from Type 2 Diabetes, to Dementia, through to COVID-19. This final episode of season 1 finishes with the exciting prospects for expansion in this field, inclusive of a novel prediction model library being developed, but with the need to ensure transparency and reproducibility, as well a critical need for education across the field through to end users, clinicians.

Listen to the episode here or via your preferred podcast app.

Voice of EHDEN Episode #7 - The intricacies of data quality, the Data Quality Dashboard, and a new sub-specialty focus on data quality: a discussion with Clair Blacketer

In this episode we discuss a definition of data quality and some of the inherent challenges with real world data quality with Clair Blacketer, Janssen Epidemiology, OHDSI and Erasmus MC. Clair describes the work she and colleagues have been engaged in on the development of a criteria-driven Data Quality Dashboard (DQD). some recent publications (Blacketer, et al, and Blacketer, et al), and the impact of using the DQD and process with Data Partners from the EHDEN COVID-19 call (2020). We discuss the experience in the field of using the DQD and the insights on quality of source and mapped data, as well as the iterative stages in enhancing the quality of data in the Common Data Model. Finally, Clair discusses the emerging 'sub-specialty' of data quality and aspirations for the expansion of her and others work on the DQD. More information on the DQD can be found on the OHDSI GitHub here.

Listen to the episode here or via your preferred podcast app.

Voice of EHDEN Episode #6 - The EHDEN SME Directory & SME experiences with Data Partner mapping to the OMOP CDM

In this episode, we are pleased to speak with Andreas Kremer, Co-Founder of ITTM Solutions, Luxembourg, and Mark Rogers, ETL Product Manager, Imosphere, UK, representing two of our small-to-medium-sized-enterprises (SMEs), who are part of the expanding network of EHDEN-certified SMEs in Europe. They both share the impetus for joining this EHDEN programme, and discuss the experience and learning from working with Data Partners on mapping their source data to the OMOP common data model. Importantly, there are many levels of engagement, support and development beyond the focus on an ETL. Lastly, we speak about the future role of SMEs in European research more widely, and their integral role in enabling programmes, projects and initiatives utilising real world data.

Voice of EHDEN Episode #5 - Joining EHDEN as a Data Partner: experiences from UK Biobank and UCL

In this episode, we hear from Václav Papež, Research Associate at University College London (UCL), about the onboarding experience of UCL and UK Biobank as an EHDEN Data Partner. We discuss some of his latest research on defining phenotypes in data from electronic health records, his experiences with mapping data to the OMOP CDM with The Hyve in the IMI BigData@Heart project, as well as the recent EHDEN E-THON (Evidence-a-thon) and his experiences in participating in medical evidence generation in the EHDEN Network.

Listen to the episode here or via your preferred podcast app.

Voice of EHDEN Episode #4 - Improving the quality of cancer care for this and future generations: a conversation with James N'Dow about the EHDEN/PIONEER/OHDSI prostate cancer study-a-thon

In this episode, we dive into a very important healthcare topic: how collaborations with patients, clinicians and professional medical societies can help us generate evidence from observational data to advance cancer care. We discuss the joint EHDEN / PIONEER / OHDSI study-a-thon about prostate cancer earlier this year with our guest, James N'Dow, Adjunct Secretary General for Education at European Association of Urology and Professor of Urology at the University of Aberdeen, Scotland, and also PIONEER Academic Coordinator. We also touch upon the relationship between RCTs (Randomised Controlled Trials), observational studies, real-world outcomes and how important they are to inform clinical guidelines and improving the quality and experience of cancer care for patients.

Listen to the episode here or via your preferred podcast app.

Voice of EHDEN Episode #3 - Patient involvement with Open Science - a conversation with the European Patient Forum

In this episode, Gözde Susuzlu, Project Coordinator, and Estefania Cordero, Project Communications Officer, at the European Patients Forum discuss the rise of patient involvement in healthcare research, the need for support and digital literacy, and the role of such programmes as EHDEN. They explore the DataSavesLives initiative and the wider European Health Data Space (EHDS) development, finishing with the insights derived from the recent EPF survey conducted on the impact of the COVID-19 pandemic on patients and patient organisation.

The EPF 2021 Congress will be held virtually 26-29 October, more information here.

Listen to the episode here or via your preferred podcast app.

Voice of EHDEN Episode #2 - How open science is changing medical research in the era of COVID-19

In this episode, Dani Prieto-Alhambra, Professor of Pharmaco- and Device Epidemiology University of Oxford and academic lead for the work package in EHDEN focusing on the generation of real world evidence, talks about COVID-19, and how new, open science ways of working such as study-a-thons are influencing medical research.

Listen to the episode here or via your preferred podcast app.

Voice of EHDEN Episode #1 - Global open science and observational research: a conversation with international thought leader, Patrick Ryan, OHDSI & Janssen

In our first episode of season one, Patrick Ryan, PhD, VP Observational Health Data Analytics, Janssen R&D, Assistant Professor, Adjunct; Department of Biomedical Informatics, Columbia University Medical Center, and founding member of Observational Health Data Sciences & Informatics (OHDSI) joins us to discuss the last decade of OHDSI's and now EHDEN's methodological and tool development.

We expand into COVID-19 and the pandemic's impact on observational research, and conclude by discussing OHDSI's educational remit and the need for upskilling in the research community.

The Global OHDSI Symposium is 12-15th September, 2021 - more information via OHDSI.org.

Listen to the episode here or via your preferred podcast app.

New Voice of EHDEN Podcast!

Watch this space for a new podcast series with experts in and external to the EHDEN project discussing key aspects of working with real world data in large scale observational research, network studies and building 21st century architectures.

Over the coming months you will hear from international thought leaders, EHDEN Partners and collaborators on their experiences and perspectives and we hope that this will be both informative and inspirational.

The Voice of EHDEN will be available here, via Anchor, Spotify, Apple Podcasts, Google Podcasts and many other podcast distributors.

Coming soon....listen to the trailer here.