Voice of EHDEN
27 episodes - English - Latest episode: about 1 year ago -Welcome to the European Health Data and Evidence Network (EHDEN) an Innovative Medicines Initiative (IMI) public private project. More via https://ehden.eu. In this podcast experts will discuss key aspects of working with real world health data in large scale observational research, network studies and building 21st century research architectures. International thought leaders, EHDEN Partners and others will share experiences and perspectives, and we hope that this will be both informative and inspirational!
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Episodes
A conversation with Dr Eric Sutherland, Digital Health Lead, OECD on digital health ecosystems and the three layers of digital tools, integrated data and trusted analysis
March 27, 2023 14:49 - 55 minutes - 51.5 MBWe welcome Eric Sutherland, Senior Health Economist at the Organisation for Economic Co-operation and Development (OECD), which we covered in episode 2 of season 2 with Eric's predecessor, Jillian Oderkirk. Eric spent 20 years with a global bank in the financial sector, but wanted to fulfil his wish to be engaged and find meaning in his work, transitioning to roles locally and federally in health on data strategy. Having worked with the Canadian government on health data strategy development...
Ethical, Legal & Social Implications #2: Exploring the concept of trust and health data with Dr Mackenzie Graham
March 07, 2023 10:02 - 46 minutes - 43.1 MBThe Voice of EHDEN podcast is pleased to continue our occasional ELSI series, and this is the first episode of season 4, focusing on the concept of 'trust' within the context of health and health research, and in particular real world data. In this episode we are joined by Dr Mackenzie Graham, Senior Research Fellow in Data Ethics, Wellcome Centre for Ethics and Humanities, University of Oxford. Mackenzie has a facinating background in neuroscience, data and data ethics, and also collaborate...
2022, a remarkable year for us all, and for the European OHDSI and EHDEN communities, and looking ahead to 2023 a pivotal year for EHDEN and beyond
January 17, 2023 20:11 - 44 minutes - 41 MBIn our last episode of season 3 (delayed due to scheduling issues), we are delighted to invite back Prof Peter Rijnbeek, Chair of Medical Informatics at Erasmus Medical Centre, Rotterdam, Coordinator of EHDEN, Director of the DARWIN EU Coordination Centre, and Lead for OHDSI Europe, who usually ends each season of this podcast. For this episode Peter reflects on the success of the OHDSI Europe symposium (24-26th June), held aboard the SS Rotterdam in the harbour and at Erasmus MC, with 350 ...
An exploration of Health Data Research UK and UK Alliance - the Data Science Institution and its strategy for UK health research, and collaborating with EHDEN
December 06, 2022 09:32 - 39 minutes - 36.8 MBIn our penultimate episode of season 3, and this year, we are delighted to be speaking with David Seymour, Director of Infrastructure and Services, and Paola Quattroni, Head of Alliance Strategy & Engagement, at the Health Data Research UK (HDR UK) network, Data Science Institute, and UK Health Data Research Alliance. Both initally outline their careers to date, and both David and Paola have very applicable experience in working to ensure data utilisation by researchers in elderly care and o...
Ethical, Legal & Social Implications #1: The Concentric Circles Framework and working with health data through federated data networks
November 14, 2022 15:56 - 41 minutes - 38 MBThe Voice of EHDEN podcast is pleased to publish a new limited series on ethical, legal and social implications (ELSI) of working with health data for research, and this first episode with Dr Richard Milne, social scientist, Wellcome Connecting Science and the Kavli Centre for Ethics, Science and the Public, and Dr Mark Sheehan, philosopher, Oxford Biomedical Research Centre Ethics Fellow, both in the UK. In our discussion, both Richard and Mark outline the work of the EHDEN Ethics Advisory...
A perspective on health data, public private partnership and the pharmaceutical industry, with Magda Chlebus, European Federation of Pharmaceutical Industries & Associations (EFPIA)
October 28, 2022 09:57 - 38 minutes - 35.6 MBIn this fourth episode we have a conversation with Magda Chlebus, Executive Director, Science, Policy & Regulatory Affairs at EFPIA, exploring both her career and work in relation to health data, public private partnerships (IMI, IHI) and the importance of both to the Pharmaceutical Industry. EFPIA is the representative federation of R&D-based pharmaceutical companies, creating a collaborative environment for its members to innovate, discover, develop and deliver new therapies and vaccines ...
A conversation with Prof Paul Nagy, enhancing clinical decision-making and supporting future generations of practitioners as clinician researchers within a learning health system
October 11, 2022 12:19 - 40 minutes - 37.2 MBEpisode 3 of season 3, and a conversation with Prof Paul Nagy, Deputy Director, Johns Hopkins Medicine Technology Innovation Center, Associate Professor of Radiology and Radiological Science. Paul outlines his career trajectory that led to his current roles within Johns Hopkins, but also collaborating with OHDSI across multiple workgroups, inclusive more recently the Education WG. Paul started out in Radiology, originally as a Diagnostic Physicist, and was instrumental in developing internat...
A rising star in the RWD/RWE domain, Prof Liesbet Peeters, her journey in addressing frustrations in working with data, and answering key questions in Multiple Sclerosis
September 27, 2022 19:27 - 43 minutes - 40.1 MBIn the second episode of season 3 we meet with Assistant Professor Liesbet Peeters, leading a research group at the Biomedical Research Institute & Data Science Institute, Hasselt University, Belgium, and the lead for the Multiple Sclerosis Data Alliance (MSDA). Liesbet has been described as a 'rising star' in the domain of real world data/evidence, and she had a very interesting path to her current position with a background in bioengineering, gene and cell technology, animal production, an...
A personal perspective from Prof Dipak Kalra, President, Institute for Innovation through Health Data: a forty year view on systems, policies, technology and incentives
September 14, 2022 12:12 - 44 minutes - 41.4 MBWelcome to this first episode of season 3, and a great way to start with a conversation with Prof Dipak Kalra, formerly a Primary Care Practitioner in London, UK, academic at University College London, and Ghent University, and President of the Institute for Innovation through Health Data (i~HD). Dipak is internationally known and renowned with a reputation for cogent and clear thinking around health data, data interoperability and quality, and policy development, with i~HD being a leading E...
OHDSI Europe, EHDEN, the OMOP common data model and a new European research agenda in open science, where have we been and where are we going?
July 11, 2022 19:49 - 35 minutes - 32.8 MBIn our last episode of season 2, we are delighted to invite back Prof Peter Rijnbeek, Chair of Medical Informatics at Erasmus Medical Centre, Rotterdam, Coordinator of EHDEN, Director of the DARWIN EU Coordination Centre, and Lead for OHDSI Europe, who ended season one of this podcast discussing predictive analytics, and ends now season 2. For this episode Peter reflects on the success of the OHDSI Europe symposium (24-26th June), held aboard the SS Rotterdam in the harbour and at Erasmus ...
A new vision of conducting research with real world data, what have we learned from COVID-19, what is EHDEN doing and creative disruption with the OHDSI open science framework
June 10, 2022 10:23 - 41 minutes - 38.5 MBWe are delighted to be conversing with Prof Dani Prieto-Alhambra, Professor of Pharmaco and Device Epidemology, NDORMS, University of Oxford, UK, and part-time Professor of Real World Evidence, Erasmus MC, Rotterdam, and Research Coordinator for EHDEN. In this penultimate episode of season 2, Dani returns to the podcast (he also was in episode #2 of season 1) to discuss his perspective on evidence generation and conducting research with real world data today and a vision for tomorrow. We st...
The GetReal Institute - Putting Real World Evidence into Practice and learning by doing - improving the implementation of RWE in European health care decision-making
May 04, 2022 22:24 - 40 minutes - 37.3 MBWith a change to the schedule in episode #6, we meet with Shahid Hanif, Managing Director of the Get Real Institute (GRI), a year old organisation that originated from the IMI GetReal project (2013-2017) and the follow up GetReal Initiative (2017-2021). Shahid has a background in molecular biology and IT, before moving into policy work and several years with the Association of the British Pharmaceutical Industry (ABPI), consultancy, and then his current role. Shahid is now focusing on establ...
The curation of an open science community in Europe and sutainability of the EHDEN mission, a startup in the IMI programme
April 24, 2022 12:11 - 42 minutes - 39.8 MBIn episode #5 of the podcast, we meet with Carlos Diaz, CEO of Synapse Research in Spain, a specialist SME managing complex projects in IMI and Horizon 2020 (considered the number one SME), such as EHDEN, and formerly an economist and business administrator. Joining him is Johann Proeve, a biologist by training, who spent 36 years in clinical data management at Bayer Healthcare, and who ran the global data management organisation for 15 years, and who worked within IMI1 EHR4CR, and following...
The curation of an open science community in Europe and sustainability of the EHDEN mission, a startup in the IMI programme
April 24, 2022 12:11 - 42 minutes - 39.8 MBIn episode #5 of the podcast, we meet with Carlos Diaz, CEO of Synapse Research in Spain, a specialist SME managing complex projects in IMI and Horizon 2020 (considered the number one SME), such as EHDEN, and formerly an economist and business administrator. Joining him is Johann Proeve, a biologist by training, who spent 36 years in clinical data management at Bayer Healthcare, and who ran the global data management organisation for 15 years, and who worked within IMI1 EHR4CR, and following...
Building the EHDEN Portal, the technical architecture to support open science in the EHDEN Community, addressing challenges and driving research innovation
April 07, 2022 09:10 - 38 minutes - 35.4 MBWelcome to episode 4, discussing the architectural developments in EHDEN, within Work Package 4, co-led by Julia Kurps, Team Lead of the Real World Data Team, The Hyve, and Michel Van Speybroeck, Director, Data Sciences, Janssen. We explore the considerable opportunity, challenges and innovation required to develop a central Portal for EHDEN than can support research and collaboration between Data Partners and researchers. Julia and Michel discuss their own unique backgrounds and careers, a...
The Innovative Medicines Initiative, now Innovative Health Initiative, a unique public private partnership for Europe that provides the opportunity for start up projects like EHDEN
March 24, 2022 08:00 - 38 minutes - 35.8 MBIn episode 3, we speak with Colm Carroll, Scientific Project Manager at IHI (formerly IMI), to discuss the largest public private partnership (PPP) of its kind in healthcare, in the world, serving the European region. Colm discusses his own role, as well as IMI, running for more than a decade in driving innovation in healthcare, and the new IHI, which is widening scope and scale of the programme. We explore his role with the many, diverse projects he works with across the health data domain,...
An international perspective with the OECD on utilising RWD for healthcare system benchmarking and information systems
March 10, 2022 11:51 - 44 minutes - 41.5 MBIn this second episode of season 2 we discuss an international perspective of using RWD to evaluate country healthcare systems and their information systems with Jillian Oderkirk, Senior Economist, Health Division at the Organisation for Economic Cooperation and Development (OECD), an intergovernmental economic organisation with 38 member countries founded in 1961. Jillian provides a unique perspective from her global position on the health agenda of the OECD, and in particular the need to ...
Health Technology Assessment (HTA), RWD/RWE and EHDEN: enhancing methods, learning and the evaluation of therapeutics
February 25, 2022 10:24 - 42 minutes - 38.9 MBIn this first episode of season 2 we discuss Health Technology Assessment, a multidisciplinary, transparent process for evaluating therapeutic agents and technologies in terms of efficacy and value in treating the indicated population, within the wider context of a country's healthcare system. Joining us to discuss this is Dalia Dawoud, Senior Scientific Advisor at NICE, the National Institute for for Health and Care Excellence in London, and Eline van Overbeeke, Health Economics and Outcome...
Using historical data to predict patients' future outcomes and exciting times for predictive, federated modelling
December 09, 2021 11:00 - 27 minutes - 25.1 MBIn 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 bri...
The intricacies of data quality, the Data Quality Dashboard, and a new sub-specialty focus on data quality: a discussion with Clair Blacketer
November 30, 2021 11:00 - 37 minutes - 35.1 MBIn 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 disc...
The EHDEN SME Directory & SME experiences with Data Partner mapping to the OMOP CDM
November 18, 2021 11:00 - 28 minutes - 26.3 MBIn 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. Import...
Joining EHDEN as a Data Partner: experiences from UK Biobank and UCL
November 04, 2021 14:00 - 19 minutes - 17.6 MBIn 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 generat...
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
October 21, 2021 10:47 - 25 minutes - 24 MBIn 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 al...
Patient involvement with Open Science - a conversation with the European Patient Forum
October 07, 2021 08:00 - 24 minutes - 22.4 MBIn 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 p...
How open science is changing medical research in the era of COVID-19
September 26, 2021 10:52 - 24 minutes - 22.6 MBIn 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.
Global open science and observational research: a conversation with international thought leader, Patrick Ryan, OHDSI & Janssen
September 09, 2021 12:07 - 23 minutes - 21.9 MBIn 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 ...
Voice of EHDEN Trailer
September 07, 2021 14:59 - 2 minutes - 2.65 MBWelcome to season 1 of the Voice of EHDEN (VoE) podcast series. VoE will bring together a broad range of experts, all of whom are working at the edge of new developments with real-world healthcare data and large-scale research at all levels. They will share their first-hand experiences and help us gain a better understanding of the challenges and progress being made on this front. For more information about EHDEN, upcoming and past episodes, or to suggest future topics, please visit our webs...