Podcasts

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 health care delivery and outcomes within the overall health ecosystem.

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.

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).

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'.

Some additional resources from the OECD:

• OECD reports:
  • ⁠⁠Health data governance⁠⁠
  • ⁠⁠Integrated care⁠⁠
  • ⁠⁠Health system resilience⁠⁠

• Canadian reports:
  • ⁠Expert group on a Pan-Canadian Health Data Strategy⁠⁠
  • ⁠Canadian report on doctors in Nova Scotia⁠⁠

The views expressed by the participants are personal and not necessarily reflective of their organisations.

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.

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.

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.

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 here, and speaking to a number of aspects discussed in this episode.

The views expressed by the participants are personal and not necessarily reflective of their organisations.