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!
Voice of EHDEN
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Podcast Overview
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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9/7/2021
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Recent Episodes
March 27, 2023
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
<p>We 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, Eric recently moved to the OECD, in particular focusing on the impact of digital tools and data on heath care delivery and outcomes within the overall health ecosystem.</p> <p>In this conversation we start discussing Eric's definition of digital health, in his new role as Digital Health Lead at the OECD, and recognising there is no universal definition, but with a particular focus on technologies, interoperability and governance, linkage, quality of data, analytics and various intended use of health data. Against a context of incoherent fragmentation, Eric is focused on being able to produce useful guidance for countries to implement integrated digital health ecosystems, based on the three layers of digital tools, integrated data and responsible analytics.</p> <p>Beyond this Eric outlines what he thinks is working today in digital health, and what's not, using an analogy of water, pipes and outlets to describe this, where we find ourselves too often drowning in data, but thirsting for evidence. Continuing to use this analogy we discuss how this all operates, who is responsible for the different elements, and some best practice use cases, such as OHDSI, or the FAIR principles, with ideas to promote conscious collaboration in making this all work. A lot of what we are trying to do is grow the digital health ecosystem by addressing technical fragmentation; the social, cultural, policy and process challenges; and trustworthiness (as opposed to trust alone).</p> <p>In the end phase of this conversation, Eric outlines what he thinks are the priorities for Digital Health, with the three layers in mind, and a need for integrated care via multidisciplinary providers supported by integrated data, with a pivot to person-centric versus a facilities-centric philosophy. Inclusivity of new technologies to reduce non-value added tasks and activities while rationalising better data governance and data capture requirements could certainly beneficially impact on the workforce, lowering workloads and enhancing care delivery as one example. And as Eric points out, 'if we want to go fast, go alone, if you want to go far, go together'.</p> <p><br></p> <p>Some additional resources from the OECD:</p> <ul> <li>OECD reports:</li> <ul> <li><a href="https://www.oecd.org/health/health-data-governance-for-the-digital-age-68b60796-en.htm">Health data governance</a></li> <li><a href="https://www.oecd-ilibrary.org/social-issues-migration-health/international-comparisons-of-the-quality-and-outcomes-of-integrated-care_480cf8a0-en">Integrated care</a></li> <li><a href="https://www.oecd.org/health/ready-for-the-next-crisis-investing-in-health-system-resilience-1e53cf80-en.htm">Health system resilience</a></li> </ul> </ul> <ul> <li>Canadian reports:</li> <ul> <li><a href="https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/list/pan-canadian-health-data-strategy-reports-summaries/expert-advisory-group-report-01-charting-path-toward-ambition.html">Expert group on a Pan-Canadian Health Data Strategy</a></li> <li><a href="https://www.cfib-fcei.ca/en/media/canadian-doctors-spend-over-18-million-hours-a-year-on-unnecessary-administrative-work">Canadian report on doctors in Nova Scotia</a></li> </ul> </ul> <p><br>The views expressed by the participants are personal and not necessarily reflective of their organisations.</p>
March 7, 2023
Ethical, Legal & Social Implications #2: Exploring the concept of trust and health data with Dr Mackenzie Graham
<p>The 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 collaborates with Dr Mark Sheehan and Dr Richard Milne, our participants in the first episode of our ELSI series.</p> <p>In the discussion, we explore what is meant by, 'trust', and also trustworthiness, and reliance on appropriate governance systems to support individuals and patients being confident in who and how they can trust. Within this we investigate underlying concepts that result in trust, what it is and what it takes for trust and trustworthiness, such as motives and prior experience, very much within a motivation-based model.</p> <p>Beyond this, we focus in on aspects of data use, the role of Tech Titans and trade offs we all make in society around the use of our personal data, through to sociotechnical architectures, e.g., Trusted Research Environments (TREs), federated data networks, like EHDEN, DARWIN EU(R) and the European Health Data Space (EHDS). From this the attributes, roles and actor's responsibilities are articulated, and a delineation of both passive and active activity around trust. Finally, we land on the counter factual concept of 'distrust' and the need to explore this further, especially in the context of health and health data use for research.</p> <p>Specifically the role of TREs is explored in terms of trust, and Mackenzie and colleagues recently published in the Journal of Medical Ethics on, 'Trust and the Goldacre Review: why trusted research environments are not about trust', available <a href="https://jme.bmj.com/content/early/2022/08/23/jme-2022-108435" target="_blank">here</a>, and speaking to a number of aspects discussed in this episode.</p> <p>The views expressed by the participants are personal and not necessarily reflective of their organisations.</p>
January 17, 2023
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
<p>In 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 <a href="https://www.ema.europa.eu/en/about-us/how-we-work/big-data/data-analysis-real-world-interrogation-network-darwin-eu">DARWIN EU</a> Coordination Centre, and Lead for <a href="https://ohdsi-europe.org/">OHDSI Europe</a>, who usually ends each season of this podcast.</p> <p>For this episode Peter reflects on the success of the OHDSI Europe <a href="https://ohdsi-europe.org/index.php/symposium-2022">symposium</a> (24-26th June), held aboard the SS Rotterdam in the harbour and at Erasmus MC, with 350 registrants, 24 plenaries, 80 posters, a workshop and multiple OHDSI working group meetings. It was also an important timing post-COVID 19 lockdowns and was one of the first in-person OHDSI meetings, facilitating a return to networking and conversation not via video screens. The next symposium will be held in Rotterdam in June 2023, details will follow (keep an eye on the OHDSI Europe site).</p> <p>Peter outlined the work of his group at Erasmus, and video interviews with his Post-Docs were conducted late in 2022 and are very informative on the their work in federated learning, AI/ML and utilising OMOP-mapped datasets, within Work Package 3 of EHDEN (<a href="https://www.ehden.eu/work-package-3/" target="_blank">here</a>). In EHDEN we have reached 187 Data Partners in 29 countries, and 64 SMEs in 22 countries, a new community that did not exist pre-EHDEN, and now a new phase in completing industrial mapping to the OMOP CDM, but importantly the evidence generation phase local and regional, with emerging collaboration, sub-networks and national nodes already emerging.</p> <p>In the conversation Peter outlines his own career development and the impact on his work focus and collaborations at Erasmus, in EHDEN and DARWIN EU, OHDSI Europe and Global. Using the experience also of the COVID-19 pandemic and the progress in EHDEN, we explore the advances and current challenges in the expansion of the use of the OMOP CDM, which is the glue in Peter's mind for the work we are all engaged in, and the post-ETL phase of using CDM-mapped datasets, iterating on tools, skills and methods and upskilling (via the EHDEN Academy). Needing high quality, rapid evidence, is a ubiquitous need, well characterised by the COVID-19 global public health emergency, where the opportunity for classical studies was limited.</p> <p>In the last part of the discussion Peter speaks to his vision for the future of EHDEN, the focus on scientific advice and services, as well as training, and his confidence in sustainability. Furthermore, continued work within OHDSI, and in DARWIN EU, all point to a remarkable opportunity for European open science research in health, also with transition from the IMI EHDEN to the not-for-profit EHDEN.</p> <p>The views expressed by the participants are personal and not necessarily reflective of their organisations.</p> <p>The Voice of EHDEN will return in March for season 4.</p>
26 total episodes available
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